tag:blogger.com,1999:blog-61817806912388148232024-02-21T12:42:11.141+11:00Living with Bob (Dysautonomia)Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.comBlogger539125tag:blogger.com,1999:blog-6181780691238814823.post-6860951694986993312019-12-29T15:32:00.000+11:002020-02-19T12:36:27.514+11:00Summer Retreat<br />
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">[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.]</span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">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.<br />
<br />
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. <br />
<br />
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. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">Just.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">So far. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">Soon. <br style="mso-special-character: line-break;" />
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">*****<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;"><br />
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. </span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">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. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">The heat rises and the danger with it. <br />
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Summer is now all harsh edges and scouring surfaces. And we stretch thin under
its gaze.<br style="mso-special-character: line-break;" />
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">******<o:p></o:p></span></div>
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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.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">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.<o:p></o:p></span></div>
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<br />
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? <o:p></o:p></span><br />
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">Heat is an ever-present worry that collects other
worries as the days stretch out. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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.<br />
<br />
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? <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">Self-care now becomes ever more intertwined with
retreat. </span><br />
<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;"><br /></span>
<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">Isolation the norm.<br style="mso-special-character: line-break;" />
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">*****<o:p></o:p></span></div>
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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.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">Retreat.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">Relentless.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">Relentless retreat. <o:p></o:p></span></div>
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<span style="font-size: 12pt;">*****</span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">Where once we would retreat to the hills for cooler
climes or to the coast for cool saltwater. <br />
Now we retreat from nature<br />
For self-preservation.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">Anathema to the heart. And yet….<o:p></o:p></span></div>
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Retreat inside.<br />
To artificial cooling for artificial life. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">Retreat and hope the power stays on. <br />
Retreat and prepare.<br style="mso-special-character: line-break;" />
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">Prepare. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">Prepare. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">Prepare. <br />
<br />
The long hot Summers that stretch ever longer. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">The long hot Summers that wreak havoc on dysfunctional
flesh. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">The long hot Summers that shrink life. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">The long hot Summers that exhaust body and mind.<br style="mso-special-character: line-break;" />
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<span style="font-family: "times new roman" , serif; font-size: 12pt;">*****</span></div>
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The days stretch.<o:p></o:p></span><br />
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">And I enter my confinement.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">Dark and claustrophobic spaces. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">Where I dream in hot, flustered and irritated walls.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">For a time where memories of flight and
self-preservation will fade <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">and retreat will once
more mean <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">recovery,
<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">renewal<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;">and
reverie.<o:p></o:p></span></div>
<br />
MichelleMichelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com0tag:blogger.com,1999:blog-6181780691238814823.post-34942646688771238272019-11-06T12:05:00.001+11:002019-11-06T13:20:12.328+11:00And now she is gone.<br />
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[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.]</div>
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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.<br />
<br />
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. <br />
<br />
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. <br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
And now she is gone.<br />
<br />
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.
<br />
<br />
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.<br />
<br />
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. </div>
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I couldn’t
watch while they took her away. <br />
<br />
As the front door closed and silence descended. <br />
<br />
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. <br />
<br />
And now she is gone. <o:p></o:p></div>
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<br />
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.<o:p></o:p><br />
<br />
I am wrung out and exhausted.</div>
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There is a large Great Dane shaped hole in my heart. And
all my tears fail to fill it. <br />
<br />
I know it’ll get easier with time. But the house feels less of a home without
her presence. <br />
<br />
I know it’ll get easier. But for now, the pain sits heavy. <br />
<br />
<br />
Michelle<br />
<br />
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<br />Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com0tag:blogger.com,1999:blog-6181780691238814823.post-4987402921555654732019-08-13T14:27:00.000+10:002019-08-13T14:27:52.071+10:0010th Blog Birthday.<blockquote class="instagram-media" data-instgrm-permalink="https://www.instagram.com/p/BvYYm72BpCV/" data-instgrm-version="12" style="background: #fff; border-radius: 3px; border: 0; box-shadow: 0 0 1px 0 rgba(0 , 0 , 0 , 0.5) , 0 1px 10px 0 rgba(0 , 0 , 0 , 0.15); margin: 1px; max-width: 540px; min-width: 326px; padding: 0; width: 99.375%;">
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<a href="https://www.instagram.com/p/BvYYm72BpCV/" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none;" target="_blank">A post shared by Michelle Roger (@michelle_roger)</a> on <time datetime="2019-03-24T06:28:34+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Mar 23, 2019 at 11:28pm PDT</time></div>
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<span style="background-color: white; font-size: 14px;"><span style="color: red;">[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. </span></span><br />
<span style="background-color: white; color: red; font-family: , "blinkmacsystemfont" , "segoe ui" , "roboto" , "helvetica" , "arial" , sans-serif; font-size: 14px;"><br /></span>
<span style="background-color: white; color: red; font-family: , "blinkmacsystemfont" , "segoe ui" , "roboto" , "helvetica" , "arial" , sans-serif; font-size: 14px;">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.] </span><br />
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<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: inherit;"><br /><br />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. <br />
<br />
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.<br />
<br />
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.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><span style="font-size: 12pt; line-height: 107%;"><br />
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.<br />
<br />
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.<br />
<br />
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 <i>those</i> days in the
long list of <i>those</i> days. <i>Those</i> 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. <br />
<br />
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 <i>Instagram</i>,
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. <br />
<br />
I wrote years back about how life becomes okayish after a while.<br />
<br />
<i><span style="background: white; color: black;">“Those first days and months are
hard and scary and lonely. But you'll make it through.<span style="mso-spacerun: yes;"> </span>You think you won’t.<span style="mso-spacerun: yes;"> </span>You'll want to throw in the towel and scream
"No more!", but you'll make it out the other side. <span style="mso-spacerun: yes;"> </span>And you'll do it again and again. <span style="mso-spacerun: yes;"> </span>I can't predict how your symptoms will pan out
over time. <span style="mso-spacerun: yes;"> </span>We are all very individual. <span style="mso-spacerun: yes;"> </span>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. <span style="mso-spacerun: yes;"> </span>Your body may
still be broken, but your ability to deal with it will get better. <span style="mso-spacerun: yes;"> </span>You will find your stride. <span style="mso-spacerun: yes;"> </span>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. <span style="mso-spacerun: yes;"> </span>It won’t be easy but you'll
find that your ability to cope and your acceptance will grow. <span style="mso-spacerun: yes;"> </span>Your spirit will heal and you'll find
direction you never imagined. <span style="mso-spacerun: yes;"> </span>You are
filled with possibilities and, if you give yourself permission, you'll find
them. <span style="mso-spacerun: yes;"> </span>Being ill can give you the freedom
to explore yourself in ways you never thought possible. <span style="mso-spacerun: yes;"> </span>Life with Dysautonomia or any chronic illness,
is a life changed, but sometimes that change is a wonderful thing…. Just know,
it gets better. <span style="mso-spacerun: yes;"> </span>Not in the Disneyesque
sense of shooting stars and rainbow farting unicorns. <span style="mso-spacerun: yes;"> </span>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. <span style="mso-spacerun: yes;"> </span>It takes time, and there will
be tears and disappointment and setbacks. <span style="mso-spacerun: yes;"> </span>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.</span>”</i></span><br />
<br />
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. <br /><br /><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: inherit;">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. <br />
<br />
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.<br />
<br />
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. <br />
<br />
And through it all there is life. There is laughter and joy. There are friendships
and love. <br />
<br />
And an integration of it all where I feel more myself than I ever had in 46
years of life.</span></span><br />
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: inherit;"><br /></span></span>
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: inherit;"><br />
<br />
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.<br />
<br />
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. <o:p></o:p></span></span></div>
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<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: inherit;">Thank you to all who’ve taken time out of your lives
to read and be part of this little community. <br />
<br />
Michelle <br />
<br />
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. <br /><br /><br /><br />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. <o:p></o:p></span></span></div>
<br />
<iframe allow="accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/QVGkonT-5sA" width="560"></iframe>Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com1tag:blogger.com,1999:blog-6181780691238814823.post-87006901182282164572019-03-05T12:22:00.001+11:002019-03-05T12:22:24.866+11:00Tiny Reflections<blockquote class="instagram-media" data-instgrm-permalink="https://www.instagram.com/p/BucVb1BB2_P/?utm_source=ig_embed&utm_medium=loading&utm_campaign=embed_loading_state_control" data-instgrm-version="9" style="background: #fff; border-radius: 3px; border: 0; box-shadow: 0 0 1px 0 rgba(0 , 0 , 0 , 0.5) , 0 1px 10px 0 rgba(0 , 0 , 0 , 0.15); margin: 1px; max-width: 540px; min-width: 326px; padding: 0; width: 99.375%;">
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<a href="https://www.instagram.com/p/BucVb1BB2_P/?utm_source=ig_embed&utm_medium=loading&utm_campaign=embed_loading_state_control" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none;" target="_blank">A post shared by Michelle Roger (@michelle_roger)</a> on <time datetime="2019-02-28T22:46:25+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Feb 28, 2019 at 2:46pm PST</time></div>
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[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.]<span style="font-family: inherit;"><br /></span><br />
<br />
<span style="font-family: inherit;">Some days I’m not sure who I am. My confidence bottoms out and a state of ennui weaves its way into my heart. </span><br />
<br />
<span style="font-family: inherit;">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. </span><br />
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<span style="font-family: inherit;">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. </span><br />
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<span style="font-family: inherit;">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? </span><br />
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<span style="font-family: inherit;">Who was I?</span><br />
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<span style="font-family: inherit;">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. </span><br />
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<span style="font-family: inherit;">I am forced to re-examine myself and my experience. </span><br />
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<span style="font-family: inherit;">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. </span><br />
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<span style="font-family: inherit;">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. </span><br />
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<span style="font-family: inherit;">I will not listen to the naysayers. </span><br />
<span style="font-family: inherit;">I will not allow them to go unchallenged. </span><br />
<span style="font-family: inherit;">I will know myself and say, I am here. </span><br />
<span style="font-family: inherit;">I am disabled. </span><br />
<span style="font-family: inherit;">And I am proud.</span><br />
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<span style="font-family: inherit;">Michelle<br /><br /></span><br />
<iframe allow="accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/4gASz57eWIY" width="560"></iframe>
Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com0tag:blogger.com,1999:blog-6181780691238814823.post-24212369624366863662019-02-28T13:14:00.001+11:002019-02-28T13:19:53.382+11:00Tripping the light fantastic<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi86cfzMhBpnxuPvytsaBdfOcyOwtMnW8s5PkhN5SJmJOnTvDV6PnPz8M6H4lZCXatsn7KUy-8X8ltHix-i7J5F4cSnzERFzw1GO8ozBh_PrQJR6a3blYHOy1lqmQuzGejyZ0V6LtI8Yv_O/s1600/lit+up+walking+stick+in+the+dark.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="768" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi86cfzMhBpnxuPvytsaBdfOcyOwtMnW8s5PkhN5SJmJOnTvDV6PnPz8M6H4lZCXatsn7KUy-8X8ltHix-i7J5F4cSnzERFzw1GO8ozBh_PrQJR6a3blYHOy1lqmQuzGejyZ0V6LtI8Yv_O/s640/lit+up+walking+stick+in+the+dark.jpg" width="512" /></a></div>
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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.<br />
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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.<br />
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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 <a href="https://www.instagram.com/michelle_roger/">Instagram</a>. Words came early this morning, while my hair sat askew thanks to a hastily pushed up sleeping mask and the dried remnants of <i>Mestinon</i> 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. </div>
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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.<br />
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*****</div>
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<span style="font-family: inherit;">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 </span>its<span style="font-family: inherit;"> soothing tone through my body. </span><br />
<span style="font-family: inherit;"><br /></span><span style="font-family: inherit;">Possums rattle across the roof. The odd moo echos across still paddocks to land softly on my pillow. Creaks and cracks sound </span>as<span style="font-family: inherit;"> 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. </span><br />
<span style="font-family: inherit;">I don’t have this thing called life worked out yet. I push and it pushes back. </span><br />
<span style="font-family: inherit;">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 </span>wake-up<span style="font-family: inherit;"> alarm. </span><br />
<span style="font-family: inherit;"><br /></span><span style="font-family: inherit;">3am. </span><br />
<span style="font-family: inherit;">Of course, it is. </span><br />
<span style="font-family: inherit;">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. </span><br />
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<span style="font-family: inherit;">Focus on the </span>nightlife<span style="font-family: inherit;">. Focus on the natural world that continues on while the human world attempts </span>sleep<span style="font-family: inherit;">. 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
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<iframe allow="accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/aNZ6Tr3cTT0" width="560"></iframe>Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com4tag:blogger.com,1999:blog-6181780691238814823.post-32997255127083278122018-08-02T10:24:00.000+10:002020-07-14T11:24:42.991+10:00Show and tell<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTTDE8rclTJbsSv9_SWbLYigjL0W7KeLIBJ40ABDb-yNEIamD1IBZVlo5fTowlAzxCQmAUu-Krx9jXMqGIzcO3ouSyUhDcwb7ZdsxQfCQDTvq8enyRqUI4G_6umft1XkN9Z0BPZKCxvS34/s1600/Green+lazybones+dress+and+clear+walking+stick.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="767" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTTDE8rclTJbsSv9_SWbLYigjL0W7KeLIBJ40ABDb-yNEIamD1IBZVlo5fTowlAzxCQmAUu-Krx9jXMqGIzcO3ouSyUhDcwb7ZdsxQfCQDTvq8enyRqUI4G_6umft1XkN9Z0BPZKCxvS34/s640/Green+lazybones+dress+and+clear+walking+stick.jpg" width="510" /></a></div>
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[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.]</div>
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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.<br />
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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.<br />
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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.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2wxCDA7haBCZQO9zLx73kiY3o3UbTF1COHOMlt_BI3kGh1LufLL1SZHoc7HEKjo4Nm_QHoDm0m0dTIojrTZTBQzNNCnvbDreULuJFEDwxN8H1gSyzX0cuUFAJOYllao2cgl0VRq4_YKnC/s1600/Michelle+in+ball+gown+down+at+boardwalk+and+wetlands.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="768" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2wxCDA7haBCZQO9zLx73kiY3o3UbTF1COHOMlt_BI3kGh1LufLL1SZHoc7HEKjo4Nm_QHoDm0m0dTIojrTZTBQzNNCnvbDreULuJFEDwxN8H1gSyzX0cuUFAJOYllao2cgl0VRq4_YKnC/s640/Michelle+in+ball+gown+down+at+boardwalk+and+wetlands.jpg" width="512" /></a></div>
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[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.]</div>
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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 <a href="https://www.instagram.com/michelle_roger/">#UpAndDressed</a> as they allow me to stand to show off a fabulous flared skirt, or roll to a great location.</div>
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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.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixacDWZmQz37YEXAVrxaktuCXZep0Siv7WOMQYrnUaWvY2nXCVVqRE8OAX64r8IBtcyS9mIrQlrIQP8zWmo0UO-hwdC00c6qLwGDMxxq1La8WZ6PHR-5wgMnnc8vPtShponRSuefgUx9b9/s1600/Michelle+in+alley+Frankie+Shoot.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="918" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixacDWZmQz37YEXAVrxaktuCXZep0Siv7WOMQYrnUaWvY2nXCVVqRE8OAX64r8IBtcyS9mIrQlrIQP8zWmo0UO-hwdC00c6qLwGDMxxq1La8WZ6PHR-5wgMnnc8vPtShponRSuefgUx9b9/s640/Michelle+in+alley+Frankie+Shoot.jpg" width="612" /></a></div>
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[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.] </div>
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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.<br />
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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.</div>
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Walking stick, wheelchair or compression stockings, are analogous to a pair of glasses. </div>
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Walking sticks, wheelchairs, crutches, and walkers help with mobility.</div>
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Compression stockings help to keep the blood or other fluids flowing in our limbs.<br />
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Glasses help us see.</div>
<b><br />The only difference is that we continue to see glasses as a <i>normal</i> or even fashionable accessory, while mobility aides, compression stockings and other medical aids are seen as signifying an unpalatable difference. </b><br />
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I would love to see other aids styled as these glasses are in the photos from the <i>Specsavers</i> 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.<br />
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Oh, how we could change perceptions of other mobility and medical aides if they were treated in the same manner.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaj1NxSTT-n8CF_cK2lS0bdT7CaNCfhGdewRJjAc15twZOMYugqpE0ElKCYBVZZGr5qSNKWgDnSAls7MVezzOZ8cRrSQHQjON2HcBd5QnFjVCXh-wxkCDBem2i33rp0rXLSk0BoJyUU_Ty/s1600/Specsavers+photo.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="466" data-original-width="960" height="310" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaj1NxSTT-n8CF_cK2lS0bdT7CaNCfhGdewRJjAc15twZOMYugqpE0ElKCYBVZZGr5qSNKWgDnSAls7MVezzOZ8cRrSQHQjON2HcBd5QnFjVCXh-wxkCDBem2i33rp0rXLSk0BoJyUU_Ty/s640/Specsavers+photo.jpg" width="640" /></a></div>
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[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.]</div>
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I now have the words to explain much of my initial rejection of mobility aids and compression stockings, <i>internalised ableism</i>. 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 <i>overcome </i>and<i> </i>live <i>despite. </i>To<i> </i>not allow disability to <i>define us</i> and never <i>give in</i> or <i>up</i>. 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.<br />
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And where does that lead? For me and many others, it results in injury, a worsening of health, and increased isolation.<br />
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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.<br />
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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.<br />
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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. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4-PFg_HN4YJTCHnH504_uNjBQQd2aUY2Xl8Je6fwOv-MHBR3FkuJxmtHgE8lEB9_ZIjnvpWsDqcuDoqeV4D0WInB2RKUyqRKiCN62LVrcV1SBn2C_dbFpW3r23YS46re8ZRud1eh7ktJr/s1600/Micheel+in+front+of+green+wall.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="768" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4-PFg_HN4YJTCHnH504_uNjBQQd2aUY2Xl8Je6fwOv-MHBR3FkuJxmtHgE8lEB9_ZIjnvpWsDqcuDoqeV4D0WInB2RKUyqRKiCN62LVrcV1SBn2C_dbFpW3r23YS46re8ZRud1eh7ktJr/s640/Micheel+in+front+of+green+wall.jpg" width="512" /></a></div>
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[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.]<br />
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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?<br />
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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:<br />
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We <b>ARE</b> </div>
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<a href="https://www.instagram.com/explore/tags/disabledandstylish/">#DisabledAndStylish</a> </div>
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<a href="https://www.instagram.com/explore/tags/disabledandcute/">#DisabledAndCute</a> </div>
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<a href="https://www.instagram.com/explore/tags/babeswithmobilityaids/">#BabesWithMobilityAides</a></div>
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There is </div>
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<a href="https://www.instagram.com/explore/tags/disabilityfashion/">#DisabilityFashion</a> </div>
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and </div>
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<a href="https://www.instagram.com/explore/tags/disabilitystyle/">#DisabilityStyle</a></div>
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We are unapologetically visible. </div>
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and we have</div>
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<a href="https://www.instagram.com/explore/tags/disabilitypride/">#DisabilityPride</a></div>
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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.<br />
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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.</div>
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Michelle</div>
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Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com8tag:blogger.com,1999:blog-6181780691238814823.post-5628640715165151472018-07-07T13:27:00.000+10:002018-07-10T11:52:04.770+10:00When the pickings are slim a single jumpsuit feels like a miracle. The state of accessible fashion in Australia.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpAG9Eg07mUi0oJxMVMYl2LOoSnODNuyOPH-Jb7cMwKZe5qJ9aych9UQmhgombY__d9XlGmJXnGbKHlRpvotm7RJGIPKtvmugM1EY6JX83bLauvYxgdqDz6MOawkjI0KXvqXkdLTGwIolA/s1600/asos+jumpsuit.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="663" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpAG9Eg07mUi0oJxMVMYl2LOoSnODNuyOPH-Jb7cMwKZe5qJ9aych9UQmhgombY__d9XlGmJXnGbKHlRpvotm7RJGIPKtvmugM1EY6JX83bLauvYxgdqDz6MOawkjI0KXvqXkdLTGwIolA/s640/asos+jumpsuit.jpg" width="442" /></a></div>
[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]<br />
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Yesterday fashion juggernaut <a href="http://www.asos.com/asos/asos-design-tie-dye-all-in-one-jumpsuit/prd/9183597?clr=multi&SearchQuery=tie%20dye%20all%20in%20one&gridcolumn=2&gridrow=1&gridsize=4&pge=1&pgesize=72&totalstyles=2"><i>ASOS</i> released a two-piece waterproof jumpsuit </a>designed in conjunction with <i>BBC</i> 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 <span style="background-color: white; color: #141414; font-family: "open sans" , sans-serif; font-size: 16px;">£</span>50 ($AU89.42) a midrange price point not uncommon in general fashion.<br />
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And the internet<a href="https://twitter.com/i/moments/1014545587428057089"> exploded</a>.<br />
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I too was excited to see the images and to discover that the item was designed <i>with</i> rather than <i>for</i> 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 <a href="https://community.scope.org.uk/discussion/44995/mannequins-and-models-how-can-fashion-become-more-inclusive">Scope</a>, 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.<br />
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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.<br />
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While I applaud <i>ASOS</i> for the creation of this item and for the earlier inclusion of disabled model <a href="https://www.standard.co.uk/news/uk/fashion-brand-asos-praised-for-featuring-disabled-model-mama-cax-in-new-advert-a3740986.html">Mama Cax</a> 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 <i><a href="https://www.teenvogue.com/story/tommy-hilfiger-spring-2018-adaptive-collection">Tommy Adaptive</a></i> line by US brand <i>Tommy Hilfiger</i> 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 <i>ASOS's </i>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 <a href="https://theoutline.com/post/2452/when-disability-tech-is-just-a-marketing-exercise?zd=1&zi=7f7bhyb6">many companies across multiple industries who fail to follow through once the original clicks and brand enhancement dies down</a>.<br />
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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 <i>The Guardian</i> pointed out, <a href="https://www.theguardian.com/society/2018/jun/18/why-are-there-more-clothing-lines-for-dogs-than-disabled-people?CMP=share_btn_fb">there are currently more clothing labels for dogs than there are for disabled people.</a><br />
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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.<br />
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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.<br />
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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 <a href="https://www.nytimes.com/2018/06/20/style/instagram-grandmas.html">out-dated ideas of what constitutes fashion for an older population</a>. 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.<br />
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I've <a href="https://bobisdysautonomia.blogspot.com/2017/06/yet-again-i-am-reminded-that-australian.html">written previously</a> 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.<br />
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<a href="https://www.fungglobalretailtech.com/research/deep-dive-inclusive-clothing-market-represents-significant-largely-untapped-opportunity/">Recent modelling</a> 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 <a href="http://www.who.int/disabilities/world_report/2011/report/en/">approximately 1 billion people</a>.<br />
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<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: x-large;"><a href="https://www.fungglobalretailtech.com/research/deep-dive-inclusive-clothing-market-represents-significant-largely-untapped-opportunity/">"Coresight Research estimates that the global market for adaptive apparel, accessories and footwear will total $278.2 billion in 2018 and grow to $325.8 billion by 2022 (our estimates are conservative because the World Health Organization’s figures do not include children with disabilities under the age of 15)."</a></span><br />
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Glasgow based <a href="http://www.vblush.com/"><i>Vanilla Blush</i> </a>is an example of a fashion brand understanding that style and the practicals of adaptive fashion aren't mutually exclusive and can be profitable. The lingerie and now swimwear (soon to also include activewear) brand run by Nicola Dames creates pieces for those living with a stoma. The brand now with an <a href="https://www.insider.co.uk/special-reports/vanilla-blush-nicola-dames-glasgow-12534826">80% profit margin and annual sales of <span style="background-color: white; color: #141414; font-family: "open sans" , sans-serif; font-size: 16px;">£</span>500,000</a> (AU$ 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 <i><a href="https://www.ingawellbeing.com/">INGA Wellbeing</a></i> are working with another two UK universities, London College of Fashion to understand <a href="https://www.drlizamorton.com/research-blog/wearapy-can-clothing-impact-on-recovery">the effect clothing has on recovery from serious illness</a>.<br />
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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.<br />
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<a href="https://www.drlizamorton.com/research-blog/wearapy-can-clothing-impact-on-recovery"><span style="font-size: x-large;"><span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;">"You don’t have to be a</span><span class="text_exposed_show" style="background-color: white; color: #1d2129; display: inline; font-family: "helvetica" , "arial" , sans-serif;"> fashionista to know that what you wear impacts how you feel about yourself. Yet, fashion is unrepresented in contemporary psychology.' - Dr Liza Morton</span></span></a><br />
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New York's <i><a href="http://www.openstylelab.com/">Open Style Lab</a> (OSL)</i> is a model that Australian fashion design schools could learn from and implement. Established in 2014 <i>OSL</i> 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 <i>Vogue</i> 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 <i>for</i> disabled clients, the reality is that the organisation employs a clear design philosophy of <i>with; </i><br />
<i><br /></i><span style="color: #333333; font-family: "savoy" , "georgia" , serif;"><span style="font-size: x-large;"><a href="http://“we%20talked%20a%20lot%20about%20the%20user%20experience%2C%20asking%20clients%20what%20subway%20line%20they%20take%2C%20how%20they%20navigate%20new%20york%20city%2C%20and%20what%20their%20day%20involves%2C%20to%20[reinforce]%20that%20design%20is%20a%20holistic%20process.”%20one%20client%20wanted%20a%20formal%20jumpsuit%20for%20her%20frequent%20dinner%20parties%20and%20events%3B%20another%20needed%20a%20tailored%20jacket%20to%20wear%20to%20an%20upcoming%20wedding%3B%20and%20two%20asked%20for%20rain%20jackets./">“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."</a> </span></span><br />
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Liz Jackson's piece for the <i><a href="https://www.nytimes.com/2018/05/30/opinion/disability-design-lifehacks.html">New York Times</a></i>, 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.<br />
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At a time when many <a href="https://www.smh.com.au/lifestyle/fashion/closure-of-local-brand-ends-another-rocky-week-for-australian-fashion-20180601-p4zisz.html">Australian fashion labels are closing their doors</a> 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.<br />
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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.<br />
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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.<br />
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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.<br />
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Michelle<br />
<br />Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com2tag:blogger.com,1999:blog-6181780691238814823.post-43953001669940584572018-06-08T10:09:00.002+10:002018-06-08T10:09:45.573+10:00Finding a Moment<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhncGPiLJyGUVRDOKxZdSxJ4s_3_H8zX4zkhCmGktxvxacbDnq5wGtVxoY9sbmN9BJjr-09dPOJBZzY1HI86sG0QOiz_lUSPRuxmGhKnC0t5uCxRRX5bafOVonNBrFPtgpqaZGCm8gfd0_Q/s1600/chickens+yoga+mat+1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="565" data-original-width="1080" height="334" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhncGPiLJyGUVRDOKxZdSxJ4s_3_H8zX4zkhCmGktxvxacbDnq5wGtVxoY9sbmN9BJjr-09dPOJBZzY1HI86sG0QOiz_lUSPRuxmGhKnC0t5uCxRRX5bafOVonNBrFPtgpqaZGCm8gfd0_Q/s640/chickens+yoga+mat+1.jpg" width="640" /></a></div>
[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.]<br />
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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.<br />
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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.<br /><br />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.<br />
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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 <i>Shop Your Wardrobe project, #syw18</i>. And I have been doing yoga every morning as part of <i>Yoga with Adriene's 30 Day Yoga Program: Truth.</i><br />
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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 <i>Bushman's</i> in the hope of keeping the Australian Summer fly invasion at bay and lay down on my beaten old yoga mat.<br />
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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.<br />
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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.<br />
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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.<br />
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<span style="background-color: white; font-family: , "blinkmacsystemfont" , "segoe ui" , "roboto" , "helvetica" , "arial" , sans-serif; font-size: 14px;">[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]</span></div>
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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.<br />
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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 <i>Leggo</i>. 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.<br />
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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.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjj-dXsog5F8dP3ETA6mDSed8zBdV5WBaWI3DZXTRqo3jeXpVN1lNEr2yXam0zpKsRyHqNvRGfA2j94iYf2UwaQYvfPbN06f2tQp7V7xzhLu7A_zLOhdiahlu7AEG938HhN9GCyjugyl82n/s1600/chickens+yoga+mat.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="496" data-original-width="948" height="334" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjj-dXsog5F8dP3ETA6mDSed8zBdV5WBaWI3DZXTRqo3jeXpVN1lNEr2yXam0zpKsRyHqNvRGfA2j94iYf2UwaQYvfPbN06f2tQp7V7xzhLu7A_zLOhdiahlu7AEG938HhN9GCyjugyl82n/s640/chickens+yoga+mat.jpg" width="640" /></a></div>
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[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.]<br />
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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.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDKmygQKgetC0cdr9a7Q4HXc0ZXjCIZ5oyPgt463rLtXt00kXUt5Robs07IosWZSQqy1nBpYFvJcrekxPxAB4wucPGqse0mBPZW1AyvRUX_-E5JLNrSh-eCLBjAjcbGcgWCGwPXF8hrJsV/s1600/freyya+yoga+mat.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="565" data-original-width="1080" height="334" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDKmygQKgetC0cdr9a7Q4HXc0ZXjCIZ5oyPgt463rLtXt00kXUt5Robs07IosWZSQqy1nBpYFvJcrekxPxAB4wucPGqse0mBPZW1AyvRUX_-E5JLNrSh-eCLBjAjcbGcgWCGwPXF8hrJsV/s640/freyya+yoga+mat.jpg" width="640" /></a><br />
[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.]<br />
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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.<br />
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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.<br />
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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.<br />
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<blockquote class="instagram-media" data-instgrm-captioned="" data-instgrm-permalink="https://www.instagram.com/p/BijF7KnBFEv/" data-instgrm-version="8" style="background: #fff; border-radius: 3px; border: 0; box-shadow: 0 0 1px 0 rgba(0 , 0 , 0 , 0.5) , 0 1px 10px 0 rgba(0 , 0 , 0 , 0.15); margin: 1px; max-width: 658px; padding: 0; width: 99.375%;">
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<a href="https://www.instagram.com/p/BijF7KnBFEv/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">My little chicks have all grown up. A cool Autumn evening but nice to sit for a minute and feed them a handful of corn. This has become a quiet evening ritual and one I look forward to each day. . . [Video: a short video of Michelle crouched down in the low light of an Autumn evening feeding my young brown and tan chooks a handful of corn.] . . #Dysautonomia #ChronicIllness #Disability #Chicken #Chooks #ILoveMyChooks #Gippsland #Australia #Backyard #Autumn #Evening #Bliss #Pets #PetTherapy #365DaysWithDisability</a></div>
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A post shared by <a href="https://www.instagram.com/michelle_roger/" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" target="_blank"> Michelle Roger</a> (@michelle_roger) on <time datetime="2018-05-09T07:38:52+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">May 9, 2018 at 12:38am PDT</time></div>
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MichelleMichelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com0tag:blogger.com,1999:blog-6181780691238814823.post-76504246642671920422018-04-06T17:37:00.002+10:002018-04-06T17:42:24.478+10:00Review: Sigvaris Doff n Donner. <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA6Sw0_W1jkpJRu8b1mG3Z9Vg_-7hbhAGIs6WEbbst21kNQuAkyCVongeHalxf5rroa2JoMWgTFEtAS90fKhCVSdw03U9aO4p8uUpPwQ31bpP4JOojjr_-kjcF3c6_jvSBnUakA__gi6TH/s1600/Doff+n+Donner+Sigvaris.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="480" data-original-width="360" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA6Sw0_W1jkpJRu8b1mG3Z9Vg_-7hbhAGIs6WEbbst21kNQuAkyCVongeHalxf5rroa2JoMWgTFEtAS90fKhCVSdw03U9aO4p8uUpPwQ31bpP4JOojjr_-kjcF3c6_jvSBnUakA__gi6TH/s640/Doff+n+Donner+Sigvaris.jpg" width="480" /></a></div>
<span style="color: red;"><br /></span> <span style="color: red;">[Image: Photo of the <i>Sigvaris Doff n Donner</i>. To the left of the photo is the fluid-filled and corrugated beige Doff n Donner 'doughnut'. To the right is the taller black and red cone part of the device. Photo <a href="https://www.sigvaris.com/au/en-au/product/doff-n%E2%80%99-donner">source</a>.]<br /><br /><span style="color: red;">This is not a sponsored post. I purchased my </span><i style="color: red;">Sigvaris Doff n Donner</i><span style="color: red;"> from my local </span><i style="color: red;"><a href="https://www.accessrehabequip.com.au/our-products-aged-and-disabled-equipment/personal_care/compression-stockings-and-socks/compression-applicators/display/1933-sigvaris-doff-nand%2339%3B-donnerdisplay/1933-sigvaris-doff-nand%2339%3B-donner">Access Rehabilitation Equipment</a></i><span style="color: red;"> store last year. They can be purchased directly from </span><i style="color: red;">Sigvaris</i><span style="color: red;"> stores and online from most of the larger compression stocking retailers. </span><br /><br /><span style="color: red;">I would strongly suggest anyone interested in the device ask their local distributor to get one in for them to try. If possible get a </span><i style="color: red;">Sigvaris</i><span style="color: red;"> rep familiar with the product and proficient in its use to give you a demo and instruct you on how to use it with your personal stocking. </span><br /><br /><span style="color: red;">And to get the laughs out of the way. Yes, it looks phallic. And yes it looks suss putting the stocking on. My youngest son was giggling hysterically when he accompanied me to trial the product.</span></span><br />
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Putting on compression stockings is difficult. There is no pretending otherwise. The higher the compression the more the difficulty increases. If you have poor dexterity, weakened hands, joints that sublax or dislocate, a bad back or a host of other medical issues getting compressions stockings on and off can be problematic and exhausting.<br />
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On a personal level, I have popped finger joints, punched myself in the face, and grunted and groaned while writhing on my bed trying to put them on. I've tried various techniques and used various donners, but still somedays popping them on is simply beyond me. On occasion, my husband, Mr Grumpy, helps but as my weakened legs frequently offer little resistance it ends up more hapless <i>Mr Bean</i> skit as he applies a little pressure and instead of applying the stocking my whole leg moves backwards or bends up again and again, than actual effective donning.<br />
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At the end of the day I am faced with the problem of removal. While I can get the top of my thing highs rolled down to about an inch above my knee the rest frequently remains beyond me. I often hassle Mr Grumpy back into action to help in their removal while I try and grip onto something so as to not slide forward as he attempts to pull them off my legs. Yet another <i>Mr Bean</i> skit in the making as I move in unison with the stockings thus falling off the bed or lounge.<br />
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I spotted the <i><a href="https://www.sigvaris.com/au/en-au/product/doff-n%E2%80%99-donner">Sigvaris Doff n Donner</a></i> in an advertisement last year and was intrigued by the design and apparent ease of use. My local rehabilitation store ordered in the <i>Doff n Donner</i> for me to try out (something I recommend as it is a substantial financial investment). After a demonstration and trial, I decided to purchase the <i>Doff n Donner</i> and brought it home. I've had it for about 6 months now so thought it was a great time to review not only it's ease of use, but it's usefulness over time.<br />
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<i><b><span style="font-size: x-large;">Product:</span></b></i><br />
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The <i>Sigvaris Doff n Donner</i> comes in two parts that can be purchased separately: A cone and the <i>Doff n Donner (DND</i>) itself.<br />
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The cone is made of smooth black plastic, flaring at the base and has a suction cup that allows it to fix onto a flat clean surface with a silver lever to lock it in place. There are two red strips of material extending down the cone to provide some grip to hold the stocking.<br />
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The (DND) is a squishy fluid-filled silicone "doughnut". The stocking is rolled onto the DND to both don and remove stItsngs. It's texture reminds me of some of my children's old squishy and wobbly toys.<br />
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It is suitable with "calf stockings and A-G thigh high stockings with/without grip top in all sizes and compression classes as well as open or closed toe" (<a href="https://www.sigvaris.com/au/en-au/product/doff-n%E2%80%99-donner">Source</a>)<br />
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<b><i><span style="font-size: x-large;">Trial:</span></i></b><br />
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I tried the product in the store with the help and instruction of the assistant, again with a <i>Sigvaris</i> rep who came to the rehabilitation store and here at home now for approximately 6 months.<br />
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<b><i><span style="font-size: x-large;">Results:</span></i></b><br />
<b>In <i>Sigvaris</i> branded products I wear a Small Long, closed toe, thigh high, in 20-30mmHg, and equivalent in other brands. It was in using these that I base my opinion regarding the product. If you use a different sized stocking or compression level you may have another experience, although as mentioned above neither size nor compression should matter.</b><br />
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Technique is everything with this product and will make or break its usefulness. There are a number of videos from both <i>Sigvaris</i> and various sellers as well as a small instructional leaflet and none of them really give enough information for the average user. Having used the product for months now all I can think is that the stockings used in the videos are of a larger size and lighter compression than what I use and/or the demonstrators have no level of disability or reduced functioning, as it is yet to be as easy as is shown in the videos. <br />
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There is simply no way that the stockings I use can be easily lifted over the <i>DND</i> as shown in the video below. Neither the assistant in the store nor my husband were able to manoeuvre the stocking as shown, though using a larger stocking the <i>Sigvaris</i> rep was more successful. The rep did give me some alternative tips which I have been using but are not covered in any of the official videos.<br />
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[Video: this instructional video from <i>Sigvaris</i> demonstrates how to use the <i>Doff n Donner </i>for both knee-high and thigh-high compression stockings.]<br />
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My stockings cling tightly to the cone and are still tight at the base when stretched over the cone. This makes them difficult to gather onto the DND. Even following the videos and watching the rep demonstrate the product (she was also lovely enough to let me video her so I could rewatch her technique at home) I still have difficulty at times. These days I can mostly get them on, but on days of weakness, or when my finger joints are particularly sublaxy I cannot use this part of the device.<br />
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However, when I do get them on the DND properly then it works a treat and it is incredibly easy to both don and remove my stockings.<br />
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<b><i><span style="font-size: large;">Donning the stocking</span></i></b><br />
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The base of the cone has a suction cup that you lock in place with a small metal arm. Finding a place in my home that worked with the suction cup was difficult. It needs a very clean very smooth table top or bench to adhere properly. I note this having gone to roll the DND up and smacked myself in the face after the whole device came unstuck from my bathroom bench.<br />
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<i><b>Tip: to increase adherence I wipe down the bench with a damp cloth to remove any specks of makeup, toothpaste or dust. The small amount of water also helps increase the suction.</b> </i><br />
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Placing the stocking on the cone properly is essential. The toe of the stocking needs to be firmly smoothed over the end of the cone. Take the time to smooth down the stocking over the cone, with the extra stocking bunching down around the base.<br />
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<i><b>Tip: Make sure the heel of the stocking is facing you. You need to keep note of this as you roll up the stocking so you can later place it right way down as you don your stocking</b>.</i><br />
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Gather the stocking up around the DND. This part is tricky with a smaller, higher strength stocking. It has taken much trial and error to get this part worked out. The DND is very mobile. This would be less problematic with a larger or low compression stocking, or a knee-high stocking. The length of the cone is perfect for a knee-high stocking, but with a thigh-high, it leaves a lot of material bunched at the base which really needs to be stretched up over the DND to be able to use the DND all the way up the thigh when donning your stocking.<br />
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<i><b>Tip: make sure to tuck the top of your stocking into the inner part of the DND to make it grip as you roll it up the cone. It doesn't need much as the silicon tends to have enough friction to get it to grip with even one small section tucked in.</b></i><br />
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Once the stocking is rolled onto the DND you need to poke your fingers in push the stocking further to make the toe seam clearly out and visible. This is why it is important to know where the heel is (something I learnt the hard way early on). You should only need a little pressure to get the stocking to begin to roll over the toes and onto the foot. The fluid action of the DND allows it to flow easily over the foot, ankle and up the leg with little pressure required. While I mostly tend to bend over and feed the DND over my foot and leg I have also placed it on the floor (carpeted, you need that grip) once my toes are in and used minimal force to roll the DND over my foot and heel.<br />
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<i><b>Tip: You will still need to smooth the stocking once on to ensure even compression. A pair of washing up gloves works well. Just use gentle upward strokes. Evening out your compression will also make them more comfortable to wear. </b></i><br />
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<b><i><span style="font-size: large;">Removing your stocking:</span></i></b><br />
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This part of the product is an absolute dream. You simply roll the DND back up your leg, pull down the top of the stocking down over the DND and roll. It moves like a dream down the leg. I do still find the ankle a bit tight, but I simply position my foot so the rolled DND is on the ground and pull my foot back gentle and the stocking rolls right off my foot. The stocking can then be simply unrolled from the DND.<br />
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<i><b>Tip: carpet is again your friend for gripping the DND when it is at your ankle to grip as you pull your foot back. I have used it on tiles with success but carpet is much easier.</b></i><br />
<b><br /></b> <i><b>Tip: to remove the stocking from the DND I grab the toe of the stocking and shake, letting the weight of the DND help to unroll the stocking.</b></i><br />
<b><br /></b> <i><b>Tip: make sure your clothing is clear of the DND and stockings as it grabs everything. I have caught my clothes in the DND time and again.</b></i><br />
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<blockquote class="instagram-media" data-instgrm-permalink="https://www.instagram.com/p/BatDJaTHiWN/" data-instgrm-version="8" style="background: #fff; border-radius: 3px; border: 0; box-shadow: 0 0 1px 0 rgba(0 , 0 , 0 , 0.5) , 0 1px 10px 0 rgba(0 , 0 , 0 , 0.15); margin: 1px; max-width: 658px; padding: 0; width: 99.375%;">
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<a href="https://www.instagram.com/p/BatDJaTHiWN/" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none;" target="_blank">A post shared by Michelle Roger (@michelle_roger)</a> on <time datetime="2017-10-26T08:17:50+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Oct 26, 2017 at 1:17am PDT</time></div>
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[Video: short video of Michelle sitting at her kitchen table removing her stockings with the <i>Doff n Donner</i>. She wears a green and black dress and her stockings are black and white batik compression stockings from <i>Juzo</i>. She removes the stocking quickly and with little effort. At the end of the video, she jiggles the stocking and <i>Doff n Donner</i> to separate the two.]<br />
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<b><i><span style="font-size: x-large;">Verdict:</span></i></b><br />
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The <b><i>Sigvaris Doff n Donner</i></b> is unlike any other donning products on the market and the unique design has many pluses.<br />
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It removes stockings like an absolute dream. I love this aspect. It means I can remove my stockings when my husband isn't home to help and anything that increases independence is a plus in my book. Given that by the end of the day my energy levels are pretty much non-existent, I'd say this product is excellent for removing my stockings.<br />
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But it also has problems.<br />
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The price. A comparison of prices from various outlets is relatively consistent with the $157 I paid here in Australia for both pieces. This is a significant outlay for users who are more likely to be on limited incomes. Like all disability-related products, cost can reduce accessibility.<br />
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While the cone is designed to be used with both knee and thigh-high stockings it feels too short for thigh-highs and the bunching of stocking material at the bottom makes it difficult to stretch up adequately onto the DND (especially on a smaller, higher compression stocking). Having also practised with a knee-high I can say that this worked really well in comparison and was far easier, ie worked as advertised. While for storage the compact size is better, perhaps a telescopic option that can extend the cone for a thigh-high might be a consideration for any future design revisions.<br />
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The suction cup relies on a completely smooth and clean surface. It doesn't maintain suction on other surfaces. Even my gloss paint coffee table was not sufficient. I was left with my bathroom bench as the only place in my house I could achieve suction, which can be problematic on the days when I am unable to stand.<br />
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While I use the DND regularly to remove my stockings, I do find myself not bothering with the cone and DND to don my stockings when it doesn't work the first time around. I simply don't have the energy or patience to try it over and over on the days that I can't get the right grip from the start. The nature of my home is that I am unable to leave the cone set up, meaning I have to get it out and set it up and take it down every time it is used. And while this may seem a very small step, it can be a step too far on a particularly low energy, low strength day.<br />
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Even after all this time I have only been able to really position things enough to use the DND to just over my knee after which I simply manoeuver the lower compression material up to its correct position on my thigh (stockings provided graded compression which is strongest at the ankle and decreases as the material goes up the leg). This can be problematic. While getting a stocking over the ankle is frequently the most difficult area, many patients will require the DND to work all the way up the thigh as they are unable to pull the stockings up that far, especially if they wish to don them independently.<br />
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Like many disability devices, this product seems more targeted to non-disabled carers and all the instructional or product videos are shown by demonstrators who have no visible disability. It often seems that there is an expectation that those requiring compression garments are more likely to have a carer rather than live independently. Admittedly, the product does say it is for "wearers themselves" but given my experience, and many reviews I have read, I would suggest that you still need to have a significant level of functionality to be able to use the product as demonstrated.<br />
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<i><b>Personally, I want products that increase my independence. </b></i></div>
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<i><i><b>The Sigvaris Doff n Donner partially meets this brief. </b></i></i></div>
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Since purchase, I have found a number of instructional videos of people who purchase only the DND (both pieces can be purchased separately) and use their arm to roll the stocking onto the device. This works surprisingly well. My only issue with this technique is that I am unable to hold my arm up long enough to do it well or often. But it may be an option for those with better upper arm strength.<br />
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<iframe allow="autoplay; encrypted-media" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/Cjiuz-z3lE0" width="560"></iframe> <br />
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[Video: a short demonstration video from <i>Sigvaris</i> using the <i>DND</i> portion of the device on an arm (no cone) to roll up a compression stocking.]<br />
<b><i><span style="font-size: large;"><br />Would I buy the product again?</span></i></b><br />
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The DND potion 100% yes, being able to take my stockings off so easily is brilliant. It means I am no longer reliant on my husband to help, especially important when he is working nights and I am home alone to try and manage their removal. Having been caught out by myself with them partially and haphazardly rolled down, causing excessive painful compression, knowing I can now easily remove them by myself is a relief. This part of the product is simple and easy to use. Perfect for increasing independence.<br />
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The cone I am unsure. When it works well it is brilliant. When it doesn't it is nothing but frustration. With technique so important especially with smaller and higher compression thigh-highs the available instructional videos are useless. They simply don't reflect the reality. One on one instruction from someone experienced with their use is essential (thank you again to the <i>Sigvaris</i> rep who was very patient and allowed me to video her technique) otherwise the device is simply expensive frustration. I do also think some form of telescopic extension for longer stockings would increase the ease of use.<br />
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Have you used the <i>Sigvaris Doff n Donner</i>? I'd love to hear feedback from others.<br />
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Michelle<br />
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Sarah Vaughan's version of <i>Shiny Stockings</i> feels like the right musical accompaniment.<br />
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Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com6tag:blogger.com,1999:blog-6181780691238814823.post-65885826506580792018-03-29T15:06:00.000+11:002018-03-29T15:06:20.911+11:00A day in the life.<div class="separator" style="clear: both; text-align: center;">
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[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.]<br />
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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.<br />
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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.<br />
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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.<br />
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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*<br />
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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.<br />
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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.<br />
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Sitting quietly near a photo of myself and Mr Grumpy, a blurb about my disability experience underneath. It's crowded and noisy. The coffee, <i>International Roast </i>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.<br />
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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.<br />
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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.<br />
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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 <i>American Idol</i>. 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.<br />
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<br /><br />I love this song by Sara Watkins. It always feels restful and joyous.<br />
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<iframe allow="autoplay; encrypted-media" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/eLpBPiGt248" width="560"></iframe>Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com0tag:blogger.com,1999:blog-6181780691238814823.post-62986204471109144512018-02-23T15:50:00.003+11:002018-02-25T10:33:16.246+11:00Vintage #upanddressed<div style="line-height: 100%; margin-bottom: 0cm;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMlNf2efgvoMD7Do8cbs2dsfmktcNK-mELYY3MsZCaEIukjMajITjwjQPJFgGbco1Gbdjn5Twt0BaoW2ITkYYnHGQln2p6iaisDn5V_HPMFz_szMfNwO8asy_K6ZK4rvG63xsuhT0ZBUDC/s1600/Me+in+pink+vintage+4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: black; font-family: "courier new" , "courier" , monospace;"><img border="0" data-original-height="960" data-original-width="765" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMlNf2efgvoMD7Do8cbs2dsfmktcNK-mELYY3MsZCaEIukjMajITjwjQPJFgGbco1Gbdjn5Twt0BaoW2ITkYYnHGQln2p6iaisDn5V_HPMFz_szMfNwO8asy_K6ZK4rvG63xsuhT0ZBUDC/s640/Me+in+pink+vintage+4.jpg" width="510" /></span></a></div>
<span style="font-family: "courier new" , "courier" , monospace;">[Image: Michelle is sitting on a white wooden chair in front of a white door, window and wall. On the floor is a red and blue Turkish rug. She is holding her walking stick and her asymmetrical hair is tucked up to be a straight 20s-30s bob. She wears a 1930s cerise and red vintage full-length evening gown and black vintage-inspired shoes and accessories.]</span><br />
<span style="font-family: "courier new" , "courier" , monospace;"><br /></span> <span style="font-family: "courier new" , "courier" , monospace;"><br /></span> <span style="font-family: "courier new" , "courier" , monospace;"><br /></span> <span style="font-family: "courier new" , "courier" , monospace;">There is a certain sweetness to wearing vintage. Something no modern garment can quite replicate. Some get close. But none quite match the intrinsic beauty held by vintage pieces. It’s about history and story. Some pieces I own have a provenance. I know where they came from. How they made their way from distant lands to my rural Australian rental home. Some I know little. But the attention to detail in the stitching, the adventurous mix of colours and textures, the simple beauty of hand-covered buttons, all allow me to create stories. They also bring with them a responsibility to preserve and to cherish. To share, rather than hoard away.</span><br />
<span style="font-family: "courier new" , "courier" , monospace;"><br /></span> <span style="font-family: "courier new" , "courier" , monospace;">I have a special place in my heart for the 1920s-1930s aesthetic. The move from the constrictive garments of the earlier eras slowly giving way to bare arms and ankles, geometric lines and in turn more liberation to experiment. I love the scandals that were women showing ankles, or eating pizza in swimwear en masse, and the move away from highly exaggerated hips and rears and impossible ever shrinking waists. I love a move away from corsets that I know my current day body could never have managed. I swoon enough without the need of whalebone and ties.</span><br />
<span style="font-family: "courier new" , "courier" , monospace;"><br /></span> <span style="font-family: "courier new" , "courier" , monospace;">I love the fabrics. Vintage velvet stirs my heart more than any other. The feel under my fingertips sends tendrils of joy through my body. The colours and the weight, all feel right to my inner style voice. A couple of years ago I bought my first 30’s full length handmade red silk velvet gown. A dream I had nurtured as a child finally coming to fruition. It was part of an estate in California that was snapped up by a South Australian collector many years ago. Speaking to the seller, I wish I had stumbled across the cache. Something that at the time was unwanted and yet filled with velvets and Czech crystals. Be still my heart. That is my idea of treasure trove. The dress reveals a craftswomanship I wish I possessed. Hand-covered buttons and delicate smocking the product of hours of fine hand stitching. Beautiful full sleeves that leave me stretching my arms out in front of a mirror repeatedly, marvelling at the construction. And my luck.</span><br />
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<script async="" defer="" src="//www.instagram.com/embed.js"></script> <span style="font-family: "courier new" , "courier" , monospace;"><br /></span> <span style="font-family: "courier new" , "courier" , monospace;">I now have bedjackets, marcasite broaches and a treasured deep-green hinged bakelite clamper bracelet amongst others. I have pieces from other eras too. Picked up at op shops and vintage sellers. But it is still the 20s and 30s that call. I spend way too much time on glorious sites such as <a href="https://www.guermantesvintage.com/">Guermantes Vintage</a> wishing for a <i>Tattslotto</i> win that would allow me to indulge in my passion. Sadly not working and constant medical bills do not seem to work with a desire for gorgeous vintage clothing. </span><br />
<span style="font-family: "courier new" , "courier" , monospace;"><br /></span> <span style="font-family: "courier new" , "courier" , monospace;">Recently I received a surprise gift in the mail that added to my collection. I had spotted a beautiful 1930s cerise and red floor-length gown on a local vintage site. It was love at first sight, rather like my red velvet gown, but as I lamented my lack of funds little did I know that a friend had seen my post.</span><br />
<span style="font-family: "courier new" , "courier" , monospace;"><br /></span> <span style="font-family: "courier new" , "courier" , monospace;">A few weeks ago a package arrived. </span><br />
<span style="font-family: "courier new" , "courier" , monospace;"><br /></span> <span style="font-family: "courier new" , "courier" , monospace;">I opened it up to find the same cerise and red, bias cut, washed silk satin, embroidered, floor-length gown. Such kindness and thoughtfulness make the piece and the accompanying bits and pieces all the more special. I know little about the dress though the attention to detail and fine stitching suggest it was made to be treasured. I’ve looked at it hanging in pride of place in my wardrobe for a few weeks waiting for an occasion to wear it and yesterday I decided I was sick of waiting and it became part of my #upanddressed series on <a href="https://www.instagram.com/p/BffGi3TnQeG/?taken-by=michelle_roger">Instagram</a>.</span><br />
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<span style="font-family: "courier new" , "courier" , monospace;">I have been frocking up at home for roughly two and a half years now, after all, who doesn’t want to wear a nice dress to sit with their chickens or lie prone under an air conditioner vent and ice packs? But I had put off popping on this piece. Vintage comes with responsibility. Wearing it can be amazing, but it is also about preservation. This piece is around 90 years old so I was conscious of making sure it wasn’t going to be damaged by wear. I wanted to do justice to whoever sat at their singer sewing machine for hours and put this piece together. I want to honour that work and the knowledge that it was once special to someone else. I like to imagine it's original owner attending a glamorous dinner or dancing the light fantastic in this dress. It is definitely fit for such an occasion.</span><br />
<span style="font-family: "courier new" , "courier" , monospace;"><br /></span> <span style="font-family: "courier new" , "courier" , monospace;">I have been like a child waiting as the hours stretch out slowly on Christmas Eve and yesterday I decided to say bugger it and put it on. I pinned up my asymmetrical bob to be more in keeping with the era. Applied my makeup with shaky hands, and popped on some jewellery. I broke out my $8 bargain basement sale, vintage-inspired shoes and #upanddressed, vintage style.</span><br />
<span style="font-family: "courier new" , "courier" , monospace;"><br /></span> <span style="font-family: "courier new" , "courier" , monospace;">Freyja and the chickens were suitably impressed.</span><br />
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<span style="font-family: "courier new" , "courier" , monospace;">[Image: Michelle is standing next to a white wooden chair in front of a white door, window and wall. On the floor is a red and blue Turkish rug. She is holding her walking stick and her asymmetrical hair is tucked up to be a straight 20s-30s bob. She wears a cerise and red vintage full-length evening gown and black vintage-inspired shoes and accessories.]</span><br />
<span style="font-family: "courier new" , "courier" , monospace;"><br /></span> <span style="font-family: "courier new" , "courier" , monospace;">I’m so glad I did. It fits perfectly and moves like liquid. The way the fabric feels and moves makes me want to swish my hips. I did attempt to do just that and I’m sure my elegant clutching at walls and a wobbly walking stick version, could have been straight out of a 1930’s Hollywood blockbuster.</span><br />
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<span style="font-family: "courier new" , "courier" , monospace;">[Image: The lower half of Michelle's body can be seen in front of a white wooden chair in front of a white door, window and wall. On the floor is a red and blue Turkish rug. She is holding her walking stick and wearing a cerise and red vintage full-length evening gown and black vintage-inspired shoes and accessories.]</span><br />
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<span style="font-family: "courier new" , "courier" , monospace;">All in all, it was glorious.</span><br />
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<span style="font-family: "courier new" , "courier" , monospace;">I could have waited, but why? Why not wear it with care? Love it a second time around. Appreciate and recreate a story to match its beauty. I hammed it up in front of the camera and had fun. It was hot outside and I will have to wait for better photos in outside light when the weather cools. But I enjoyed every minute. <br /><br />I am over waiting. <br /><br />Being chronically ill life often feels like it is put on hold. We are in a limbo waiting for our body’s course to self-correct, waiting to feel well enough to go out, waiting for the right time to wear a dress, waiting for that special occasion. For the planets to align and the waters smooth. <br /><br />I am tired of waiting.</span><br />
<span style="font-family: "courier new" , "courier" , monospace;"><br /></span> <span style="font-family: "courier new" , "courier" , monospace;">So I’ll wear beautiful vintage pieces. I’ll take photos and pretend that I will one day own a complete Miss Fisher wardrobe.</span><br />
<span style="font-family: "courier new" , "courier" , monospace;"><br /></span> <span style="font-family: "courier new" , "courier" , monospace;">I’ll embrace the beauty of the pieces I am lucky enough to own. </span></div>
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<span style="font-family: "courier new" , "courier" , monospace;">And I’ll be grateful for thoughtful friends and whoever sat and made this dress with care all those years ago.</span><br />
<span style="font-family: "courier new" , "courier" , monospace;"><br /></span> <span style="font-family: "courier new" , "courier" , monospace;">Michelle</span><br />
<span style="font-family: "courier new" , "courier" , monospace;"><br /></span> <span style="font-family: "courier new" , "courier" , monospace;">Huge thanks to the lovely <a href="http://carlyfindlay.com.au/">Carly Findlay </a>who is such a thoughtful friend. It's such a lovely gift and I'll treasure it all the more for the thought attached to its purchase.<br /><br />Update: Mr Grumpy took me out for a nice dinner so I could wear the dress. I added a red velvet jacket I found at a local op shop (thrift store) and a pair of<a href="https://bobisdysautonomia.blogspot.com.au/2016/02/sigvaris-712n-allure-20-30-mmhg.html"> Sigvaris compression stockings</a>.<br /></span><br />
<iframe allowfullscreen="true" allowtransparency="true" frameborder="0" height="476" scrolling="no" src="https://www.facebook.com/plugins/video.php?href=https%3A%2F%2Fwww.facebook.com%2Fupanddressed.michelleroger%2Fvideos%2F2026386274295144%2F&show_text=0&width=476" style="border: none; overflow: hidden;" width="476"></iframe>
<span style="font-family: "courier new" , "courier" , monospace;"><br /><br />It's hard to believe that Judy Garland was only 14 when she recorded I<i class="">t's</i><i> Love I'm After</i> in 1936.</span></div>
<iframe allow="autoplay; encrypted-media" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/jlKH3bYOwbc" width="560"></iframe>Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com3tag:blogger.com,1999:blog-6181780691238814823.post-47550085069298482252017-12-29T19:04:00.001+11:002017-12-29T19:04:57.703+11:00Break<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA3pYNoq6onqXfDeqL1qvZRDC7fCEeLQgVVGdl8PHcJUDwEt3JoCEgtPLtcipAQelm7lF3LA3H9aeA2aJ3wX9ocV0nTKPoLVl6GyU4dqxU0JaXkGtIkxkVhzKtRcx977Wn8PTvDg3WF0vU/s1600/26114046_10212623353992912_3678829239440522917_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="960" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA3pYNoq6onqXfDeqL1qvZRDC7fCEeLQgVVGdl8PHcJUDwEt3JoCEgtPLtcipAQelm7lF3LA3H9aeA2aJ3wX9ocV0nTKPoLVl6GyU4dqxU0JaXkGtIkxkVhzKtRcx977Wn8PTvDg3WF0vU/s640/26114046_10212623353992912_3678829239440522917_n.jpg" width="640" /></a></div>
[Image: a photo of a white dinner plate with a pile of orange pumpkin penne pasta bake and piece of sourdough. The top of a silver fork can also be seen. A poorly handwritten url is written at the bottom of the photo. It reads "www.livingwithbob.com"]<br />
<br />
<br />
<br />
Christmas is past and New Year's on it's way. The cacophony of constant advertisements on every medium scream CELEBRATE BUY CONSUME. I've done all three. But in a subdued, more balanced manner, mostly involving food. Two Christmas celebrations down and a last belated one to go. All the trimmings here. In the heat of an Australian Christmas there is still turkey, ham, and duck. Brussel sprouts and duck fat potatoes. Trifle and Christmas pudding with lashings of brandy custard. The little I can eat is of equally little concern. It's about giving to my family, to those I love. I cannot do much of what I want to express that love these days, thanks to my body and lives spent in different cities, but in this once a year monumental period of indulgence and hard work I can provide a tangible demonstration of what they mean to me.<br />
<br />
A new lap top, my last had been living more in the realm of blank screens, it's only roll that of recipient to my frustrated expletives, has meant an enforced absence from emails and messages. I have no inclination to check anything. I have no need to feel the pressure, mostly self-imposed, to be on tap to all and sundry. My ability to say no, even if it's just to a computer program rather than human requests, is improving. It's only taken 44 years.<br />
<br />
The world is there on my phone if I want it, but in truth any scrolling is more the product of habit than want. It has been used to document our daily lives and Christmas festivities, or to run <i>Netflix</i> or <i>Plex</i>, but mostly it has sat on my bedside table, on top of the ever increasing pile of detritis that chronic illness and chronic pain invariably creates. Silver foil and plastic in various shapes and sizes. Coloured cardboard boxes with pharmacy labels are stacked and toppled over. Saved from the inevitable plunge to the carpet below by a drinking glass, or three, and a half-empty tube of <i>Mor's</i> <i>Mashmellow</i> hand cream.<br />
<br />
My desire to plug in is minimal. A small part of my brain twitches with FOMO but it is quickly silenced. I'm tried. From the past year and a three day post-Christmas migraine that makes it even harder to plug in. Even now the low rumble persists in the left side of my head. My left eye ball still recoils from light and feels both swollen and the lingering burn from the invisible red hot poker that has been using my left orbit as an Air B&B for the past few days. But it's dwindling. Slowly. But I'll take it as progress.<br />
<br />
As I type I'm cooking pumpkin in the oven to make a pasta bake for dinner. The effort with the knife stresses the already burdened tendons and muscles in hand and wrist. But the need to create, to prepare, to eat something other than left over Christmas ham sandwiches propels me stubbornly forward.<br />
<br />
There is a quiet bliss that slowly reveals itself when I cook. I rarely use a recipe, although my large collection of recipe books would suggest otherwise. Mostly I cook by touch and smell and sound. If it looks right then it is right, a timer only a prompt for a sluggish and forgetful brain not a slavish deliniator of cooked and uncooked My measurements are those of pinches and dribbles. Even if a measuring cup ends up in my hand there's always a smidgen more or a smidgen less. My refusal to be constrained to set millilitres or grams part obstinance and part an instinctive <i>knowing</i> that a bit more or a bit less is needed.<br />
<br />
If you asked me to write you a recipe I'd be stumped and stressed. The password and userID to my free recall, my organisation and judgement, are long forgotten and the sentence prompt no longer makes sense. But in the sounds of the kitchen, amidst the hiss and the whirr, the familiarity of the roll can lead me in unexpected and delightful places. The ingredients come to me in the moment. The meditation begins as the chopping board clunks onto the bench. The ingredients reveal themselves slowly at first then with increasing speed, and a dish is prepared. Ask me what I am cooking or the names of ingredients and I draw a blank. But suddenly the spell is complete and a finished dish appears.<br />
<br />
I don't know if I'm a good cook, but I enjoy it. My family tell me I bring the flavour to the food and I'll take that. My bloated shelves of bottles and spice containers are testament to my desire to bring that flavour, as is my extensive herb shelf in the garden (or is it table? At three pallets long and one pallet wide it's probably is more the later). All I need a starting spot. A cut of meat or a jar of spice and suddenly the path appears and the cooking begins.<br />
<br />
I cook when I can. When my everything aligns and my body says yes. I push myself and cook when I feel the need to create. When the need for a break from the monotony of managing my body reaches tipping point. My lap top may play music in the background, but most of the music flows in my head, singing of cinnamon and cardamom, lemongrass and basil. I break from the laptop. From electronic connection. To just exist in the moment of domestic bliss that is preparing a meal or baking a treat.<br />
<br />
I have a seat on wheels to help out. And husband and son to lift and test. I am told I use ALL the dishes. But that's what they're for. Why bother in hauling them from house to house only to sit in drawer or cupboard? Might as well get them out for a run and, well, thankfully the cook doesn't clean.<br />
<br />
The leftovers go into the freezer for the times I am too unwell to cook. Into the next day's work lunch or re-purposed into yet another meal. It feeds my youngest when he comes off a long late night of waiting tables. It is a snack to pick at during the day when I can stomach only small mouthfuls at a time. The scraps go to the compost, to the very fertile worm farm, and our perpetually ravenous chickens. The cycle continues. The compost and worm wee give nourishment to my vegetables and herbs, and the chickens share a daily bounty of body warm eggs. The Ouroboruos at work in our small suburban backyard. Collect, create, devour, lost in the joy of preparing food for those I love.<br />
<br />
My break is happening. Without decision. Without lists or resolutions. I'm sure there was a lead up, a process, maybe I was too tired to notice, but it's here now, seemingly birthed fully-formed and I'm embracing the moments.<br />
<br />
I have wound down so I can wind my way back up again. A Summer hibernation. Curled up under airconditioner vents and surrounded by crumbs of tasty Christmas goodness.<br />
<br />
The pumpkin has come out of the oven and sits cooling on the stove top. Deep orange with golden brown corners. The olive oil bubbles and glistens speckled with salt and black pepper. Soon it will join basil and garlic, ricotta and sage. The penne will tumble in boiling water which my husband will lift and drain. Followed by slow satisfying movements as weak hands swirl it through thick orange sauce. It will be topped with mozzarella and parmesan and roasted until a golden golden crust forms. The smell will drift throughout the house and out onto the evening winds. Carried to neighbours human and animal. And on to cow-filled paddocks and passing galahs.<br />
<br />
My break is quiet and perfect.<br />
<br />
And much needed.<br />
<br />
My brain rambles and my body starts to send the first signs of needed rest. I mark the time until I can find my way back to pillows and sheets, content, edible alchemy completed and stowed away.<br />
<br />
I'll live my break while I gather strings of cheese and pasta on silver tines. I'll plan some time outside tomorrow to cuddle a chook or run my hand through the chocolate mint. Or not. Breaks don't need a lot of planning. They don't need the strain of timelines and events. They just need to be embraced in whatever form they take.<br />
<br />
Today's that's pumpkin and a shower. <i>Netflix</i> and sleep.<br />
<br />
And listening to the rain as the last of the light fades from the sky.<br /><br />
Tomorrow?<br /><br />Well, that's a world of possibilities I am yet to discover. I'll just go with the flow.<br />
<br />
Michelle<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
Paul Kelly's "How to Make Gravy" seems an appropriate musical accompaniment. For those OS, this is considered an Australian classic, one of many by Paul Kelly and one that always makes me a little teary every time I hear it.<br />
<br />
<iframe allow="encrypted-media" allowfullscreen="" frameborder="0" gesture="media" height="315" src="https://www.youtube.com/embed/Yb4YWJgfmQE" width="560"></iframe>Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com1tag:blogger.com,1999:blog-6181780691238814823.post-15127631026676167372017-11-22T16:12:00.000+11:002017-11-27T11:27:28.663+11:00Heat<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_IkYnnRjMWefXiuaqNVCWIUg-J_F1oUEtL7a8petUUxYsl_utoPcxdyzS42JR0y-7m9263XyflPbo-3bNezGNezKxfEGf5Y0RuVy6GFe7kq9vO8WNeTDHCOccmz_HEvLBmD44ab8uN0jb/s1600/me+slumped+over.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1080" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_IkYnnRjMWefXiuaqNVCWIUg-J_F1oUEtL7a8petUUxYsl_utoPcxdyzS42JR0y-7m9263XyflPbo-3bNezGNezKxfEGf5Y0RuVy6GFe7kq9vO8WNeTDHCOccmz_HEvLBmD44ab8uN0jb/s640/me+slumped+over.jpg" width="640" /></a></div>
[Image: I'm slumped over resting against the roller door and bracing against the white wall. My hand is extended holding my walking stick. I am wearing a long tan skirt, white t-shirt and green jewellery. I am half in shade, half hot sun. You can't see my face for my red hair which has fallen forward.]<br />
<br />
<br />
<br />
I can hear more than feel the breeze coming through the open door. Beyond the dusty fly wire the leaves of the trees rustle, disturbed by the ebb and flow of small invisible waves. The security door is doing it's job keeping out not just burglars and miscreants, but the breeze that sends the white roses bobbing outside the loungeroom window.<br />
<br />
The dull whirr of the air conditioner is all noise no substance. Evaporative cooling, cheap to install and useless when there's even a touch of humidity in the air. A loose print bangs softly against the book shelf and the waist high fronds of the Bangalow palm in the entryway shudder. Freyja lies listless on the floor. Her discontent clear in growled mutterings and halfhearted attempts at movement. The heat stubbornly maintains its hold on the house.<br />
<br />
Not to say outside is that much of an improvement. Clear blue skies look straight out of a travel advertisement. Photogenic grey-green gums screaming Australia to an overseas audience. You can feel the breeze, but a moment in the sun is to feel an oppressive weight upon my whole body.<br />
<br />
The heat is here and my world shrinks.<br />
<br />
A body that cannot cope with heat is a body not designed for the Australian climate. I hear the politicians argue about climate change in terms of economies, in terms of fossil fuels, in pontific terms that only they seem to truly believe. But never the human cost. Never what it will mean to those of us whose bodies are already struggling in the heat of today, let alone the heat predicted in 50 years time. Whose worlds collapse in upon themselves each time the mercury rises.<br />
<br />
<div style="text-align: center;">
Heat intolerance is isolation. </div>
<br />
<br />
<div style="text-align: center;">
It is claustrophobic. </div>
<br />
Yesterday I dressed to go up the street only to realise that the time required to do all my and my son's errands would far exceed my ability to function in the heat. Not that he wouldn't push me in my old wheelchair. Not that some of the shops aren't airconditioned. But the drain of the heat. From the shuffle from the house to the car. The heat in the mobile greenhouse that serves as transport. The move from car to shop. In and out. Over and over. Each minute in the heat sapping strength. Not just from that day but the subsequent day and the day after that. The heat takes out credit for all the days after. And it never repays.<br />
<br />
Heat<br />
<br />
It holds me down. It suffocates. It seeps into all my pores and weaves it's way through bone and flesh. Stealing the strength and the functioning. I move through slow setting concrete. Dragging my limbs, my lungs, my mind. It's harder to think. It's harder to interact. My focus sharpens and wavers. I end up stretched too far from the smallest effort. I react like an injured animal when spoken to. Teeth bared, sharp words spit as the remnants of my reserves slip from flaccid fingers. The tendrils of heat reach deep until an amorphous agitation is all I can feel. Brain and body no longer able to find a path out.<br />
<br />
From my lowered vantage point on the lounge, a small side window perfectly frames a patch of blue sky and swaying gums. More appealing than the prosaic view I have upon standing where the same window affords a view of red bricks that form the back of our garage and a grey paling fence, but none the less isolating. Spring and Summer days may be beautiful but they mean chest pain and weakness, greying vision and shaking hands. They mean existing under ineffectual ceiling vents, devouring <i>Hydralyte </i>icypoles and the mind numbing, only slightly cooler, four walls that allow for some semblance of functioning. It means peaking out windows for a hint of the world. Short forays into the backyard to check on the chickens and back to the darkened house to listen to the dull rattle of loose prints and breeze through tree leaves. It means a ruthless dissection of time and reserves. Logistical analyses and bitter disappointment.<br />
<br />
I can go here. But not there. Not two the same day. Not two consecutive days. Is it evening or day? How far? How long? How much? It always comes back to the cost.<br />
<br />
18 to 22C the magic span of time where I function these days. Above or below I am a mess. And now we are set for months of above. Months of missed events and missed opportunities. Regrets and apologies.<br />
<br />
I feel the weight in my bones and my heart. My sluggish mind plods along unable to find solutions.<br />
<br />
It's 3pm and I am still in my pjs. Showering and dressing no where in sight. The temperature hovers the high 20s and I melt further into the brown leather. I'm supposed to be at an event at 5:30. It's a beautiful Spring day. Not a cloud in sight. A perfect beach day. An in the garden day. And a punishing day if your body is no longer capable of compensating for even a small rise in the ambient temperature.<br />
<br />
I hardly sweat now. Even on the 40C+ days. A new medication I started earlier in the year means I now have at least a handful of odd patches where the nerves put in a half-hearted effort, but not nearly enough to cool me down. I feel like my chickens on the back door step, puffed out and puffing. Beaks agape. I chomp though electrolyte icepoles as they chomp their way through the fish gut iceblocks I just put out for them. Only to slump down again to await the evening drop.<br />
<br />
The heat is here to stay and I will get through it. Just like the last 11 years. I'll step out into the world in short deliberate bursts and hopefully ED avoiding outings. I'll gaze out the open windows and listen to bird song through dusty flywire, while icepacks slowly melt on my neck. My world will be smaller and heavier. The burden for stepping outside greater. But I'll sip a G&T under my red umbrella in my back yard. I'll listen to the clink of the ice cubes on glass and feel the condensations drip down my wrist. I'll smell the mandarin peel as the oil slowly infuses the clear liquid. Chickens will be coerced into long cuddles and I'll pick cherry tomatoes off the vines in the garden beds. I'll lie on pillows and watch fairy floss clouds disappear as they pass over the edge of the red material above my head.<br />
<br />
For a while my world will be small and my connections tenuous. I'll exist until the leaves start to brown and Autumn announces it's arrival in cooling temperatures and fire-coloured leaves collecting on my doorstep. And the reawakening will be celebrated.<br />
<br />
Michelle<br />
<br />
<br />Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com3tag:blogger.com,1999:blog-6181780691238814823.post-58807988591580016562017-10-06T12:40:00.000+11:002017-10-06T12:40:15.718+11:00It's not just a step<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeH3YeMA5PxCiFj639R1aIedcorTgF9IK4diawUBTms6QNVeYpYYKzbzhw0kMF4ZU7Q1cOtHyo54dWX6jy5l_VjKcAxvmOHbi7YIUcHjomQpfGMUFv-sZp6cuONrAodep97bMODKfhKC6S/s1600/wheelchair+ramp+sign.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="423" data-original-width="564" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeH3YeMA5PxCiFj639R1aIedcorTgF9IK4diawUBTms6QNVeYpYYKzbzhw0kMF4ZU7Q1cOtHyo54dWX6jy5l_VjKcAxvmOHbi7YIUcHjomQpfGMUFv-sZp6cuONrAodep97bMODKfhKC6S/s640/wheelchair+ramp+sign.jpg" width="640" /></a></div>
<br />[Image: Handwritten sign sticky tapped to the glass in a yellow door. The sign reads, WHEELCHAIR RAMP AVAILABLE. PLEASE ASK AT COUNTER, with a cartoon of a ramp over two steps. (<a href="https://au.pinterest.com/pin/576108977306496775/">source</a>)]<br />
<br />
<br /><br />I enjoy going out to eat, even if it's one chip and a couple of <i>Ondans</i>. I like going for a glass of wine, sitting and chatting, mostly <i>at </i>Mr Grumpy as he sits and nods and uh huhs, in all the right places.<br />
<br />
Lucille is loaded on the back of the car, her cherry red cover a bright spot in the rear view mirror. I head out of the four walls that make up 90% of my week. Legs, bp, energy particularly unobliging but I have Lucille who allows me to leave the house with independence, to participate in the world. I head out on a Friday night like half the town. People enter pubs, restaurants and music venues. There's laughter, orders are placed, tonight's live music duo start to set up. I head out only to find a step.<br /><br />It's just a step.<br /><br />I should have rung ahead. I should have checked. Again. Again. Again.<br /><br />There's a portable ramp.<br />
<br />
Just ask. <br />
<br />
Not that there are any signs to let you know it exists.<br />
<br />
But I can't go through the front door. It's around the side in the tiny alley where you can't really manoeuvre. They'll move the bins, and the chairs, and the mop and bucket stored down the side. <br /><br />Everyone is overly solicitous and the crowd of onlookers gawk as the spectacle unfolds.<br /><br />Do you need a hand? No. I'll just...the hand reaches across ignoring my response. They pull and push. Complexity increases. I'm right. Let me just...I now negotiate the armpit and the body. How to fit between door frame and arm and body now towering over me, and also miss the toes that are now in the only path I can take?<br />
<br />
There's applause. Or "a good on you" "well done."<br /><br />I feel the tightening in my stomach, the fake thank you leaves my lips. The evening starts as it always does as public spectacle and it'll end in the same way. I can neither arrive or leave on my own. I must ask and wait. I must be grateful. The energy expenditure is huge I am tired before I even see the wine list. The shine is taken from the night. Again. Again. Again.<br /><br />It's not just a step.<br />
<br />
<br />
<br />
I'm sitting eating my meal, talking to Mr Grumpy and enjoying the scenery and I hear "that thing could take you to the moon!" I grimace then smile, suck down the visceral reaction. I am expected to interact with the older men at the adjoining table. They mean well. I turn away and they keep talking at me, asking questions, making inane comments. They look well pleased with themselves for deigning to interact with the woman in the wheelchair.<br />
<br />
It's not just a step.<br />
<br />
<br />
<br />
The step nearly trips me, but my other half and walking stick get me up there. I sit and have a glass of wine. I prepare to leave and an old guy thinks it's hilarious to ask about my "war wound" chuffed with his sparkling wit. He waits, expecting an explanation. I mutter a surly "it's not a war wound" and steady myself to descend the steps tension now in my previously relaxed shoulders.<br /><br />It's not just a step.<br />
<br />
<br />
<br />
<br />
The clothing store has a ramp, but a door I can't open. Someone comes frantically running. Overly solicitous. Sing song voice.<br />
<br />
I'm in but can't manoeuvre through the racks or tables thanks to displays that spill over at ground level.<br />
<br />
They have a friend, neighbour, second cousin twice removed who is disabled. Do I know them?<br />
<br />
It's so good I get out.<br />
<br />
So what's wrong with you?<br />
<br />
As I head to the back of the store, dress in my lap, it becomes clear that there is no accessible change room. I head back out the door. No purchase made.<br />
<br />
It's not just a step.<br /><br /><br /><br />
<br />
I go gift shopping. But the first store has a step. The second store? A step and a doorway too small to enter. The third a nice wide opening but a saleswoman who continues to talk to me like she's auditioning for <i>Play School</i> and pats me as I try to just look at the products.<br /><br />It's not just a step.<br /><br />
<br />
<br />
I'm at the medical clinic and need to use the loo. But the door's too heavy. The short wall to conceal the room makes the turning circle near impossible, well if I want to keep the skin on my fingers. I need assistance to open the door to the accessible loo. I need it once more to get out. The Clayton's accessible loo seems favoured where ever I go.<br />
<br />
I roll into the GP's room clipping the too small doorway. I can't get up onto the table. The pity looks start. The pat.<br />
<br />
I roll out once more to pay at the desk I can't see over.<br />
<br />
It's not just a step.<br />
<br />
<br />
<br />
<br />
My husband goes to park in the accessible bay. Only someone is there. We drive on by because we can't see if there is or isn't a permit. Drive on by until we can find a spot somewhere, far away from our destination, where he can get my wheelchair off and around to my side of the car.<br />
<br />
We pass the bay next to our destination only to see the car has no permit. But they're only going to be a minute. They'll move if someone needs it. Screw you and your special privileges. They're missing out because they don't get special bays. Nobody uses it anyway. Disabled people don't go the gym, the nightclub, the bar, the cafe, the.... Disabled people don't go out after dark. Or on weekends. Screw you, there are more important things in the world.<br />
<br />
It's not just a step.<br />
<br />
<br />
<br />
<br />
Where's your companion? I don't have one. I'm here alone. I'll keep this seat for your carer. I'm here alone. Have you got someone with you, dear? No I'm alone. Oh good on you getting out and about.<br /><br />It's not just a step.<br /><br /><br /><br />
<br />
It's not just a step, or a side entrance, or an infantilising voice, or an entitled attitude to parking bays, or the norm of steps, small doorways, heavy doors, small aisles, or no change rooms. <br />
<br />
It's not just the inability to see me as a singular independent woman.<br />
<br />
Or the rude and invasive questions.<br />
<br />
But that it fits into a narrative comprised of a long list of anothers, that are carried by the disabled community day after day after day.<br />
<br />
<br />
<br />
<br />
Another accessible parking fiasco reigns across <i>Facebook</i>.<br />
Another advocate receiving death threats.<br />
Another person is unable to access public transport.<br />
Another forced to prove their disability.<br />
Another can't access their place of employment.<br />
Another misses out on tickets due to a cumbersome accessible ticketing procedures.<br />
Another writing residency that's not accessible.<br />
Another meme about lists marginalised groups that forgets disability exists.<br />
Another advocacy event that is inaccessible.<br />
Another dies because doctors couldn't see beyond their disability.<br />
Another dies at the hands of police.<br />
Another is murdered in a <i>mercy </i>killing.<br />
Another refusal to conduct a Royal Commission into institutional abuse.<br />
Another appalling statistic about violence and abuse gets two lines before being buried under a mound of celebrity articles, or forgotten when citing statistics of violence and abuse in other intersecting groups.<br />
Another story where segregation and subjugation are marketed as inclusive.<br />
Another where people are <i>employed </i>for a pittance while the able-bodied organisers collect their regular pay checks and sit around and pat themselves on the back.<br />
Another stat on homelessness and the ridiculous lack of accessible accommodation both in public and private housing.<br />
Another story indicating we are better off dead than disabled.<br />
Another inspirational school quarterback takes disabled girl to prom, story.<br />
Another demand that disabled people put in the emotional labour to explain.<br />
Another able-bodied journalist, commentator, troll, deciding how we should feel, act, live, or die.<br />
Another saying overtly and more subtly that we could not possibly be the experts on our lives or our needs and wants.<br />
Another.<br />
<br />
Another in the long lists of anothers. <br /><br /><br /><br />
<br />
Another built on top of all the others before it. Weighing us down. Exhausting us. Until we either lash out or give in.<br />
<br />
Because it's not just a step.<br />
<br />
<br />
<br />
<br />
It is all the <i>steps </i>that have been before and will be again in the future. It's how they weave together to frame us. How they make their way to the very core of our being. How even when we pride ourselves on our strength and self-assurance, it gets in through the cracks. A putrid water leaching up through our foundations to hit us in the hidden parts of self. And how we grin and bear so much of it because you have to really pick your battles.<br />
<br />
A long never ending list. A list that says we aren't welcome. We aren't important. We aren't even an afterthought. We are less than. We are forgettable.<br />
<br />
I am tired of asking. Of making phone calls or scenes. I'm tired that I roll past business after business after business that remains inaccessible.<br />
<br />
It's that when I speak out I am chastised. <i><a href="https://bobisdysautonomia.blogspot.com.au/2014/07/be-quiet-little-disabled-person-you-are.html">Be quiet little disabled person. You are making me uncomfortable</a></i>. Be grateful. Stop being a victim. God, you're bitter. Smile. Just ignore it. Get over it. You're making me feel bad so screw you and all disabled people. There's people dying in Africa, don't you know. Let me play devils advocate for a moment.<br />
<br />
<br />
<br />
<br />
It's that I list off all the reasons we have to be upset and angry, (<a href="https://bobisdysautonomia.blogspot.com.au/2016/08/disability-erasure-at-its-finest-thanks.html">Disability erasure at it's finest</a>), I get lots of head nodding and agreement. Outrage that bursts forth, then dwindles, is forgotten, and nothing changes.<br />
<br />
<br />
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<div style="text-align: center;">
<b><span style="font-size: x-large;">It's not just a step.</span></b></div>
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<br />
<br />
<br />
It is that this world remains largely inaccessible to disabled people. Societal and institutional discrimination continues to weigh heavily on our access to not just a shop front, or our ability to go out on a Friday night, but to the societal interactions that most take for granted. A burden that we unequally must bear along with whatever our body may have thrown at us.<br />
<br />
It's not just a step and I am tired.<br />
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<br />
<br />
Michelle<br />
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<br />Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com8tag:blogger.com,1999:blog-6181780691238814823.post-49632230142728875692017-09-07T15:12:00.002+10:002017-09-07T15:17:42.254+10:00Rambles<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixmnebj8ss4BgHHCCwY5cHb3RzeUP_4gxjfBIu9t55LpRtEHJxUocLvi99-8iyzcLhBZSizpzB4A2DdQhWwjnwYhIzi9Hc1BF728WI8Hfbc6El9glyCtk2PbFUtB0aG00-KP4rfq_dYWOl/s1600/me+sick+in+bathroom.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="526" data-original-width="526" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixmnebj8ss4BgHHCCwY5cHb3RzeUP_4gxjfBIu9t55LpRtEHJxUocLvi99-8iyzcLhBZSizpzB4A2DdQhWwjnwYhIzi9Hc1BF728WI8Hfbc6El9glyCtk2PbFUtB0aG00-KP4rfq_dYWOl/s640/me+sick+in+bathroom.jpg" width="640" /></a></div>
[Image: a woman with pink hair and wearing floral pjs is sitting on the floor of her bathroom with her head in her hands. Behind her are a grey towel and cream tiles. To her right is the top of a small concrete dog doorstopper she was given many many years ago for her 18th birthday.]<br />
<br />
<i><b>I haven't been writing much but I need to get back into practice so I thought I might as well just empty my head on the page for a bit. Might clear out the cobwebs and help me to get back in the swing. The haze of exhaustion and pain meds is great for rambles.</b></i><br />
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<br />
<br />
It always amazes me that I can manoeuvre my body into positions that don't break my sleep. That in the depths of exhaustion I can roll and twist. Flop back and forth until that sweet spot is found. A precision that is broken when my breath loses its rhythm and my lungs sharply overcompensate. Or a slight change in the outside temperature draws the internal warmth across my body thanks to poorly insulated brick and steel. The barest caress of air molecules on skin and I am awoken, gasping and trying not to vomit from the pain. The micro-millimetre of difference between agony and sleep is breached and I am I am frozen.<br />
<br />
Move or be moved and agony results. I don't speak for fear of tensing already hyperaroused nerves. I don't speak to further delay the pain that I already know must come. Caught in limbo, knowing that movement will both relieve and crush. The spot in my back and hip that only ever hints at healing takes every opportunity to let me know it is still there. Plotting. Biding its time. I brace, at least mentally, and commit to what must be. Tears and bile rise as I am once more impaled by pain. I mutffle the cry in my pillow as Mr Grumpy sleeps on oblivious.<br />
<br />
Four days in bed a necessary evil for a body pushed beyond its limits. The exhaustion, nausea, pain, weakness must be managed. There's no choice in the matter. Fighting through isn't an option at this point. The lead up I played bad patient doing all I should not. Stopping when I know I should is not always practical just as it is not always what I need to maintain a sense of self. But there are draw backs.<br />
<br />
Cantankerous. My body is cantankerous. It punishes me for pushing it beyond it's limits. When I acquiesce and rest, it punishes me further. And so my sleep is broken by pain now only relived by standing upright. Standing upright that leads to passing out and all the precursor symptoms that make my daily life a challenge and lead to rest days in bed.<br />
<br />
The pain in my lower back and hip are always there though immobility bought about by an overstretched Autonomic Nervous System increases the intensity. I am stuck again where my normal Dysautonomia symptoms are slowly settling but not enough to make being up and about in the house a real option. Just enough for the restless agitation to start up. The unscratchable itch that make me irritable and terse. Offer me a drink or ask me about my day and I may rip your head off. Don't ask and I will poke the irritation like a sore tooth and run through expletives in my head. And the pain spikes as I shift my weight, or pick up my glass of water, or stay still and lose myself in reruns on the screen.<br />
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Pain is suffocation. Pain is dropping to your knees as your vision darkens. Pain is waves of nausea, a shot of bile to the back of your throat to make you gag and spasm, shooting off yet more pain. More more more.<br />
<br />
Heatpacks. Gentle moves. Pain medication. Meditation. Layers of aid. Layers of nothingness.<br />
<br />
I try to read and find myself at the end of the page not remembering a word. I try to write and the words struggle through the concrete thick sludge in my head. I can feel the ramble.<br />
<br />
Its icy outside. Spring has begun with icy winds, rain, hail and in some parts snow. Our fledgling vegetables are throwing up flowers. Small purple pea pods begin to emerge. The chickens are all laying. Their egg song fills the air echoing up the sterile dark corridor created by the twin brick walls of our and our neighbour's homes. The sun peaks under the blinds in random five minute blocks. Sharp and blinding. I scroll through photos of surrounding snow fields. Tree ferns bowing as the tiny flakes force them into genuflection. Caramel coloured cows stand in stark relief against their pure white background.<br />
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My bedside table is piled with the detritus of illness. Small mismatched cardboard boxes their silver and plastic contents half spill across dark wood. Ear plugs, tissues and empty water glasses. A half-filled dosette box balances precariously over the table edge. The accoutrements of this life scattered across the table and off, reflect the irritation and weakness that have swamped the last few days. In between, the pink and gold hand cream, the small round metal container of lip balm gold embossed on green. A pile of to read books, small ceramics and decorative boxes that remind me of kindness and friendship. Small pieces of calmer waters.<br />
<br />
I can see the edge of my shower through the ensuite door and strike a bargain. If I can shower. Just shower. I'll be happy. If I can slough off the film and feel the water on my skin I'll be alright for the next few hours. I'll roll myself up in soft pajamas and pop the top on my handcream so I can smell its warm fragrance. Tomorrow I might work up to slathering it on my fingers. I'll rub the blood back through resistant blood vessels and the mottle that is livido reticularus will retreat for a few seconds. The purple bruise that radiates up from my nail beds will subside and I will breathe in marshmallow and peach.<br />
<br />
But for now. I want to feel the heat beat on protesting skin and muscle. I need to stretch as the heat finally infuses my icy body. To loose myself in the sensation and sound. Slump on my plastic chair, head resting on the glass. Submitting to the<br />
<br />
The day continues to flow.<br />
<br />
My son brings me the freshly lain eggs so I can feel their warmth in my hands.<br />
My skin now smells like oatmeal and honey.<br />
Warmth and softness filters through my being thanks to floral flannelette.<br />
<br />
And the sharp edges are worn a little smoother.<br />
<br />
Michelle<br />
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Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com6tag:blogger.com,1999:blog-6181780691238814823.post-6667263411325868762017-08-27T13:23:00.003+10:002017-11-01T19:11:09.904+11:00Where to Buy Fashionable Medical Grade Compression Stockings in Australia.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEic6irBjV00Of4OJSD0gTgTI5F-sPfhrwndzQX9YFxaafObDX2Ni81UqYR5gLO1aIJYzfC0-ucL1-ieO5hw4n-XUqRWcaXg0dLlO9qlEo70_QIf1YLhZc9lnbnHCvNZUan_DF6AO7naFsDT/s1600/yellow+stockings.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="771" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEic6irBjV00Of4OJSD0gTgTI5F-sPfhrwndzQX9YFxaafObDX2Ni81UqYR5gLO1aIJYzfC0-ucL1-ieO5hw4n-XUqRWcaXg0dLlO9qlEo70_QIf1YLhZc9lnbnHCvNZUan_DF6AO7naFsDT/s640/yellow+stockings.jpg" width="514" /></a></div>
[Image: a woman's legs lie on some colourful velvet cushions. She wear yellow compression stockings (<i>Kings Cross Yellow</i>, last season's German <i>Juzo </i>colour range and deep red shoes with bow ties. In the distance a white chair and wall can be seen along with a plug, fairy lights and the edge of a couch.]<br />
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Here is the fair old land of Oz purchasing medical grade compression stockings, particularly fashionable compression stockings, can be a frustrating and difficult endeavour for a number of reasons.<br />
<ol>
<li>It can be incredibly expensive. Even the most basic of compression styles, particularly if you also want quality and a medium to high medical grade compression level, are going to put a large dent in your purse. </li>
<li>There are few places in Australia selling anything more than the basic beige, black and navy version. Fashionable options can take a lot of time and determination to find. </li>
<li>Compression socks in a range of styles can often be sourced but stockings either thigh high or waist high are not so easy to find.</li>
<li>We often have purchase our compression stockings from overseas companies. </li>
<li>With exchange rates at present this can be incredibly expensive.</li>
<li>Some companies postage rates are also prohibitive. </li>
<li>There are a number of companies selling compression stockings that are not medical grade compression eg <i>Scholl</i>. They are cheap and more easily accessible but in the end if you are purchasing on the advice of your Dysautonomia specialist you need a medical grade level of compression. (<a href="http://www.dysautonomiainternational.org/blog/wordpress/the-skinny-on-compression-stockings/">It is suggested</a> that waist high 30-40mmHg are the preferred strength and length for Dysautonomia. However given that many patients also experience abdominal pain a lot of patients still find adequate relief from the use of maternity stockings which have less stomach compression and thigh high options. Additionally 30-40mmHg can be incredibly hard to put on if you have any hand weakness or joint instability and many, myself included, use 20-30mmHg with success.)</li>
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So what to do and where do you start?</div>
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<b><span style="font-size: x-large;"><i>Australian Companies:</i></span></b></div>
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<b><span style="color: #cc0000; font-family: "times" , "times new roman" , serif; font-size: large;"><i>(Please note that this is not an exhaustive list, just a starting point.)</i></span></b></div>
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<b><span style="color: #cc0000; font-family: "times" , "times new roman" , serif; font-size: large;"><i><br /></i></span></b></div>
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<i><a href="http://oapl.com.au/alc-joins-oapl-family">Appliance and Limb Company</a> (now part of Oapl)</i>: One of the few local companies selling <i>Juzo </i>compression wear (socks, thigh and waist high, maternity and also arm sleeves and gauntlets) in both the US and German colour series are Sydney rehabilitation company <i>Appliance and Limb Company</i> (now part of the <i>Oapl</i> group). Currently there isn't an option for online sales and you must either ring or email the company. There is also a requirement for a doctors prescription for compression stockings (including the grade of compression). I have used this company a couple of times and while the ordering process is somewhat cumbersome and frustrating at times, it does provide the one of the cheaper access routes to the German range of <i>Juzo </i>colours (see video below).<br /><b>Update:</b> <i>Oapl</i> will be putting the <i>Juzo </i>in their online shop, with a <i>PayPal</i> option in coming months so the process to buy them should be far more streamlined than it has been.<br />
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<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/C8lCInkzb1A" width="560"></iframe>
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<a href="https://www.sigvaris.com/au/en-au"><i>Sigvaris Australia</i></a>: <i>Sigvaris </i>have an Melbourne-based shop front where you can both purchase and be fitted for compression stockings. <i>Sigvaris </i>have a selection of four colours currently available (see below) as well as the <i>Allure </i>range (see my review of the <i>Allure </i><a href="https://bobisdysautonomia.blogspot.com.au/2016/02/sigvaris-712n-allure-20-30-mmhg.html">here</a>). They also have a listing of local distributors where you can also purchase these versions. <i>Sigvaris </i>also has a <a href="https://www.facebook.com/sigvarisaustralia/">FB page</a> and are reasonably responsive.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiy1odnM3h8f4LiqSJR5q6_19hgyBsoD410M7Tgl-WVl1awaOMeY7E3z0Eta_mQjM4eTvoUs96wSXm0vM6XzuUbHVhtuEn8zyLOJoccB349dMS8OGXRmQOpnIklVq81mPwqlvGObL3vsw2b/s1600/Sigvaris+2017+Magic+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="459" data-original-width="680" height="432" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiy1odnM3h8f4LiqSJR5q6_19hgyBsoD410M7Tgl-WVl1awaOMeY7E3z0Eta_mQjM4eTvoUs96wSXm0vM6XzuUbHVhtuEn8zyLOJoccB349dMS8OGXRmQOpnIklVq81mPwqlvGObL3vsw2b/s640/Sigvaris+2017+Magic+2.jpg" width="640" /></a></div>
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<i><a href="http://compressionsockshop.com.au/">Compression Socks Shop:</a></i> as the name suggests <i>Compression Socks Shop </i>stock a large range of compression socks in some amazing colours and patterns. If you are one of the lucky Dysautonomia patients who can get away with socks instead of stockings this company has a large and ever changing range from a number of different brands. They also have a limited range of lower grade (Class 1 or 18-22mmHg) colours (eg <a href="http://compressionsockshop.com.au/product/compression-tights-bordeaux-microfiber-140-den-2339/">Bordeaux </a>is a mulberry colour) and basic colours in a medium grade (Class 2 or 23-32mmHg) in compression stockings in waist high and maternity.<br />
<i><br /><a href="http://www.2xu.com/au">2XU</a></i>: Australian athletic company <i>2XU </i>has a limited range of products which range up into the medium range of medical compression (around the 22-30mmHg range and some lower ranges). For those who prefer a more athletic look as opposed to the traditional medical compression stockings these can provide a nice alternative. Additional bonuses with 2XU are that they are easy to purchase both online and in multiple sporting outlets, and even better, they often have sales where you can pick up both socks and leggings at great prices.<br />
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Below are some <i>2XU</i> options that fall in a Class/Grade II or Moderate compression range.<br />
(NB: all of these are footless tights. Depending on how poor your peripheral perfusion is these may not be an option. Speaking as someone who ends up with purple sausage toes or feet from toeless compression stockings and compression tights it is important to consider this aspect of presentation when selecting compression options.)<br />
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<a href="http://www.2xu.com/au/p/power-recovery-compression-tights/WA4418b.html?lang=en_AU">Power Recovery Compression Tights</a> (20-30mmHg - Firm)<br />
<a href="http://www.2xu.com/au/p/refresh-recovery-tights/WA4420b.html?lang=en_AU">Refresh Recovery Tights</a> (20-25mmHg - Firm)<br />
<a href="http://www.2xu.com/au/p/mcs-run-compression-tight/WA4412b.html?lang=en_AU">MCS Run Compression Tight</a> (23-26mmHg - Firm)<br />
<a href="http://www.2xu.com/au/p/mid-rise-compression-tights/WA2864b.html?lang=en_AU">Mid-rise Compression Tight</a> (22-25mmHg - Moderate/Firm)<br />
<a href="http://www.2xu.com/au/p/mcs-cross-training-compression-tights/WA4220b.html?lang=en_AU">MCS Cross Training Compression Tights</a> (23-26mmHg - Moderate/Firm)</div>
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<i>Chemists:</i> most local chemists will offer at least one brand of compression stockings (<i>Jobst </i>seems most popular and was what I was offered first up at my local chemist). Lower grade or non-medical compression can usually be bought off the shelf. However higher grade ones need to be ordered in. Some chemists will offer a fitting service and some will require a doctor's prescription. It's a case of going into your local chemist or giving them a ring to see what they offer. This can be a reasonable starting spot if you are new to compression stockings. <br />
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<i>Private and Custom Fitting</i>: there are a variety of companies that offer custom fitting. This can be a good option if your body proportions don't fit well with the structure of mass produced stockings or if you have a specific medical need. It is worth ringing your local OT or Physiotherapist to see what companies are available in your area. Some orthotics clinics can also offer this service. Just a heads up that custom fitting is usually quite expensive. (<i><a href="https://www.oapl.com.au/orthotics-CTS">Oapl</a> </i>and <a href="https://www.venosan.com.au/custom-made-garments/custom-made-compression-garments"><i>Vennosan </i></a>are two companies that come to mind for custom compression)<br />
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Other Australian-based companies that offer basic brand specific stocking options are:<br />
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<i><a href="https://bauerfeind-australia/">Bauerfeind Australia</a></i>: <i>Bauerfeind Australia</i> offer free postage for the <i>VenoTrain</i> range of compression stockings. I did also find a Melbourne-based orthotics centre <a href="https://www.melbourneorthotics.com/">Melbourne Orthotics</a> who are able to get Bauerfeind products in if you already know what you want/need.<br />
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<i><a href="https://www.venosan.com.au/">Venosann</a></i></div>
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<i><a href="http://www.jinnimd.com/products/">Jinni</a></i></div>
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<i><a href="http://www.bsnmedical.com.au/products/wound-care-vascular/category-product-search/compression-therapy/medical-compression-hosiery.html">BSN Medical</a></i> stock <i>Jobst </i>products.<br />
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<div style="text-align: center;">
<b><span style="font-size: x-large;"><i>International Companies:</i></span></b></div>
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The options to purchase compression stockings from overseas are too extensive to list completely here. Instead I'll list a couple of the main companies that are used by local patients. Currently US companies are a little cheaper than European companies due to the exchange rate.<br />
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<a href="https://www.brightlifedirect.com/"><i>Brightlife Direct</i></a>: US based company <i>Brightlife Direct</i> offer a wide range of compressionwear including fashionable options from brands including <i>Juzo,</i> <i>Rejuvahealth </i>and <i>Sigvaris</i>. <i>Brightlife D</i>irect have a great social media presence and have been very supportive of the Dysautonomia community. Their blog is also a great source of information on topics such as the best sheers, to how to get the wrinkles out of your compression stockings. They have also been very receptive to Australian consumers concerns about issues such as the exchange rate and postage costs often offering up special codes to help with costs. I have purchased stockings through <i>Brightlife Direct</i> with no problems to date.<br />
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<i><a href="http://www.compressionstockings.com/">Compressionstockings.com:</a></i> US based <i>Compressionstockings.com</i> also offers a wide range of compressionwear including similar fashionable options from brands including <i>Juzo</i>, <i>Jobst </i>and <i>Sigvaris</i>. I have purchased stockings through <i>Compressionstockings.com </i>with no issues<i> </i>however I have heard others in Australian patient groups who have experienced issues with the company. The main complaint has been in relation to communication. Given that we are in a different time zone getting in touch with the company if there are problems with delivery or product is generally through email and this has proven problematic according to some of the messages I have been sent.<br />
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<i><a href="http://www.compressionsale.com/">Compressionsale</a></i>: Similar to <i>Brightlife Direct</i> and <i>Compressionstockings.com</i>, US based <i>Compressionsale </i>also offers a wide range of stocking options. I haven't purchased from <i>Compressionsale</i> but have had favourable reports from other Australian patients who have.<br />
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<i><a href="http://www.rejuvahealth.com/">Rejuvahealth</a></i>: US based <i>Rejuvahealth </i>was one of the first companies next to Juzo that I discovered in my hunt for fashionable compression. Sadly their range of thigh high and waist high fashionable compression has shrunk in favour of an extensive compression sock range (in the photo below is their lovely floral pattern they used to stock. I reviewed them <a href="https://bobisdysautonomia.blogspot.com.au/2014/07/rejuvahealth-sheer-floral-and-opaque.html">here</a>). You can still sometimes pick up their lovely Black Sheer Dot pattern stockings on the site and on other end of line sites. The main prohibitive aspect of <i>Rejuvahealth </i>is that there postage is quite expensive compared to other similar companies.<br />
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<a href="https://www.instagram.com/p/BJM7ETHAW-Y/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">A close up of my #compressionstockings from @rejuvahealth (sadly I don't think they make these particuar ones anymore) Who says compressionwear has to be dull or nannaish (sorry nannas of the world I think you should have groovy compression stockings too). These are 20-30mmHg so reasonable compression. You do have to search but there are fashionable options avaliable. And if you have to wear them everyday a bit of fashion helps. Even Freyja can't take her eyes off them. #dysautonomia #chronicillness #disability #compressionstockings #ootd #wiwt #40plusstyle #everydaystyle #disabledfashion #cripstyle #disabledstyle #365dayswithdisability #red #fashion #Rejuvahealth</a></div>
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A post shared by Michelle Roger (@michelle_roger) on <time datetime="2016-08-17T07:45:49+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Aug 17, 2016 at 12:45am PDT</time></div>
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<i><a href="https://www.trampshosiery.com/">Tramps Fashion Compression Hoisery</a></i>: Tramps is a relative newby on the fashionable compression scene. I first <a href="https://bobisdysautonomia.blogspot.com.au/2016/07/fashionable-compression-stockings-2016.html">wrote about them back in 2016 </a>when they popped up in my searches with what often feels elusive, patterned compression stockings. While patterns and compression can be found in upperlimb brands like <i><a href="https://lymphedivas.com/">Lymphedivas </a></i>or in compression socks, the compression stocking market has been very slow to adopt any printed options (<i>Juzo </i>do a <a href="http://www.compressionstockings.com/juzo-soft-2030-mmhg-compression-pantyhose-2001at-black-tie-dye-in-seasonal-colors-p-1419.html">tie-dyed</a>(US) and <a href="http://www.juzo.com/de/produkte/batik-collection/">batik </a>(German) print, as well as some lover level compression leggings in their <i><a href="http://www.juzousa.com/Products/Signature-Collection/Lower-Extremity-Prints">Signature </a></i>range, <i>Sigvaris </i>offer the <i><a href="https://bobisdysautonomia.blogspot.com.au/2016/02/sigvaris-712n-allure-20-30-mmhg.html">Allure</a> </i>and <i>Jobst </i>the <a href="http://www.jobststockings.com/jobst-ultrasheer-pattern-2030-mmhg-thigh-high-moderate-compression-stockings-with-silicone-dot-border-p-1356.html">Ultra Sheer Patterned</a>, <i>Rejuvahealth </i>did for a time offer <a href="https://bobisdysautonomia.blogspot.com.au/2014/07/rejuvahealth-sheer-floral-and-opaque.html">some great prints</a>.). <i>Tramps </i>offers the <a href="https://www.trampshosiery.com/products/bryanna-cheetah-jacquard"><i>Bryanna Cheetah</i> <i>Jacquard</i></a> in the 25-30mmHg range and <i><a href="https://www.trampshosiery.com/collections/all-hosiery/products/bryanna-style-hosiery">Bryanna High Waist</a></i> and <i><a href="https://www.trampshosiery.com/products/jocelynne-style-hosiery">Jocelynne Hip Hugger </a></i>is some vibrant colours.<br />
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<a href="http://www.zulily.com/"><i>Zulily</i>:</a> US based retailer <i>Zulily </i>can be another source for end of line compression stockings. It's a bit of pot luck what turns up, but if you already have an account then it's easy to check out their compression stocking and compression sock sections. <br />
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<b><i><span style="font-size: x-large;">That pesky thing called 'cost'.</span></i></b></div>
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Quality compressionwear is a significant financial investment. The more unique the item the more the cost. Items manufactured to specific individual measurements can be incredibly expensive. The financial burden of compressionwear continues to be a major factor for patients as not all insurance companies or government suppliers will pay for compression wear, or will only provide the most basic of styles. But there are a number of ways to cut costs.<br />
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<b>Private Health Insurance</b>: If you have Private Health Insurance get your doctor to write you a prescription for your stockings. Depending on your insurance provider and how you have structured your scheme, you can sometimes get all or at least part of the cost of the stockings back through your insurance company.<br />
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<b>Sign up and First purchase discounts:</b> A number of sites will offer buyers a discount on their first purchase. These discounts can range from 15-20% which can be a considerable benefit on a tight budget.<br />
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<b>Coupons:</b> There are a wide range of coupon sites offering discounts for various compressionwear websites and specific brands. Simply <i>Google </i>coupons and the brand or company you prefer and see what comes up. Most coupons are time limited so if you find a good one get on it pronto!<br />
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<b>Sales:</b> Most websites will have a sale section These can provide you with considerable savings (50-70% in some cases). For example at the time of writing, <i><a href="http://www.rejuvahealth.com/rejuvabrand/designer-support-pantyhose.html">Rejuvahealth </a></i>have some lower strength, 15-20mmHg, patterned pantyhose down to $30US score! Get on that people. End of season colours often come up in the sales a month or two after the change over. You sometimes have to put in the hard yards and search but if you have a colour or style you like for the last season pop it in <i>Google </i>and see who has any left. It can be pot luck as to sizes, styles and lengths available but I've scored some bargains over the years. If you're after a pair of stockings to wear under jeans or long skirts the world's your oyster with well known sites like <i><a href="http://www.zulily.com/">Zulily </a></i>having reputable brands at bargain basement prices.<br />
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<b>Shop around for postage:</b> Postage is the nemesis of anyone living in the Southern Hemisphere. Current rates can be highly prohibitive even if the stockings themselves are a bargain. Sometimes it is worth contacting a company to see if they will take pity on us poor folk down under and be willing to wave their postage or at the least provide a discount.<br />
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<b>Shop local:</b> Related to the postage issue is the currency exchange rate. Our piddly little AU$ is doing it tough when ordering from OS. However, sometimes local distributors can provide a cheaper option. For example here in Australia <i><a href="http://www.alc.com.au/juzo">The Appliance and Limb Centre</a></i> can source <i>Juzo Softs</i> from both Germany and the US at a much cheaper rate than using OS suppliers at present. Always keep an eye on exchange rates. Given the uncertainty of world events such as the recent Brexit, exchange rates can change rapidly. </div>
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<b>You get what you pay for:</b> There are many companies selling compression stockings for next to nothing. I saw some fabulous <i>Beetlejuice-</i>style black and white ones out of China for $10US be still my heart! But alas, when I contacted the company it became clear that we differed on the definition of 'compression'. With cheaper versions it is often hard to find out the exact compression rate and if the compression is graduated. Many companies wont respond or respond with automated emails with little to no detail.<br />
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Whilst compression stockings can be fashionable they are first and foremost a medical device and like any medical device you shouldn't scrimp on quality. If the compression is poorly designed it may not perform properly and can lead to problems in how fluids are returned. Remember we are buying these stockings to help with a medical problem. It is better to save up and buy one good quality pair of stockings from a reputable brand, than to have five cheap, but dodgy, pairs.<br />
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<i><span style="font-size: x-large;"><b>Sizing.</b></span></i></div>
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<span style="font-size: large;"><i><br /></i></span><i><a href="http://www.brightlifedirect.com/size-calculator.asp">Brightlife Direct</a></i> now have a size/brand calculator the <i><a href="http://www.brightlifedirect.com/size-calculator.asp">Brightlife Direct Size Calculator</a></i> which I tried out the other day. It's a great option if you are just starting out looking at compression stockings and are feeling overwhelmed at what to buy. You simply put in your measurements and style you're after and it pumps out a list of brands that may suit. To give you an idea of how it works I popped in my measurements and usual length and compression. As you can see below it suggested a number of products that may work for me. I would always recommend double checking a brands individual sizing to be sure, simply because it can be such an expensive outlay, but this is a great starting point.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyNQY66nbqlRGMbn-tYXu3_eOTIsxakwHSkzSM2MKzqwLJKL0zO7sfMaDXSNsnt69-LMHsHy7x_F2T8-HqF9fbfhQSlm3eyGhMREBEIiqjpJ2w-Zuv5Dvlby35zPYp0LUzN81orPBeIsQC/s1600/brightlife+dirct+size+calculator.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyNQY66nbqlRGMbn-tYXu3_eOTIsxakwHSkzSM2MKzqwLJKL0zO7sfMaDXSNsnt69-LMHsHy7x_F2T8-HqF9fbfhQSlm3eyGhMREBEIiqjpJ2w-Zuv5Dvlby35zPYp0LUzN81orPBeIsQC/s640/brightlife+dirct+size+calculator.jpg" width="404" /></a></div>
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<b><i><span style="font-size: x-large;">For more on compression wear </span></i></b></div>
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<b><i><span style="font-size: x-large;">check out:</span></i></b></div>
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<i><a href="http://bobisdysautonomia.blogspot.com.au/2012/06/compression-stockings-from-beige-to.html">Compressions Stockings from Beige to Brilliant Guide</a>.</i> My basic guide to selecting and buying compressionwear. I wrote this way back in 2012 and it's still one of my most popular posts.<br />
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<i><a href="https://bobisdysautonomia.blogspot.com.au/2016/07/fashionable-compression-stockings-2016.html">Fashionable Compression stockings: 2016 Update Options and New Tips</a>.<br /><br /><a href="https://bobisdysautonomia.blogspot.com.au/2017/03/metamorphosis-marketing-medical.html">Metamorphosis: marketing Medical Compression as Fashionable and Transforming the Narrative around Disability.</a></i><br />
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Below are a few reviews for different brands I have purchased over the years and a bit of a tongue in cheek post about how I style my compression stockings.<br />
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<a href="https://bobisdysautonomia.blogspot.com.au/2016/02/sigvaris-712n-allure-20-30-mmhg.html">Compression Stocking Review: Sigvaris 712N Allure 20-30mmHg patterned Thigh High Compression Stockings with Lace Silicon Border in Black.</a><br />
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<a href="http://bobisdysautonomia.blogspot.com.au/2014/07/rejuvahealth-sheer-floral-and-opaque.html"><i>Rejuvahealth Review.</i></a><br />
<i><br /></i><i><a href="http://bobisdysautonomia.blogspot.com.au/2015/02/allegro-microfibre-20-30mmhg-black.html">Allegro, Microfibre 20-30mmHg Black Thigh High Compression Stocking Review</a></i><br />
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<i><a href="https://bobisdysautonomia.blogspot.com.au/2014/02/lymphedivas-compression-gauntlet-review.html">LympheDiva Gauntlet Review</a></i><br />
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<a href="http://bobisdysautonomia.blogspot.com.au/2012/07/fashion-blogging-is-not-for-faint-of.html"><i>Fashion blogging is not for the faint of heart</i></a></div>
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Go forth and good luck with your purchasing.<br />
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Michelle<br />
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I've been listening to the <i>Waifs </i>while writing so it only seems fair to have one of their songs as my musical accompaniment today. I love these lines every time I hear this particular song.<br />
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<i><span style="background-color: white; color: #222222; font-family: "programme" , sans-serif; font-size: 18px;">You say that I shouldn't be so</span></i></div>
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<i><i><span style="background-color: white; color: #222222; font-family: "programme" , sans-serif; font-size: 18px;">Vague, inattentive, a law to myself</span></i></i></div>
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<i><span style="background-color: white; color: #222222; font-family: "programme" , sans-serif; font-size: 18px;"><i style="background-color: transparent;">I guess that I live in a world of my own</i></span></i></div>
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<i><span style="background-color: white; color: #222222; font-family: "programme" , sans-serif; font-size: 18px;"><i style="background-color: transparent;">And all that I know now is all that I've known</i></span></i></div>
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Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com1tag:blogger.com,1999:blog-6181780691238814823.post-35386207377635802902017-08-11T12:29:00.001+10:002017-08-24T11:00:09.943+10:00We're getting there. <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEOAMrtcvh6aA1EGmKfSSmZQjmboE0p0-weexe8zXVKR4TGEjGewCSB9R_o8TXymT5LKYMlfrH6wQx14xgTi0U7JFPNGACFzFZfJCkq_5sIUcHs2HROAIBSKHF8CMmRvU34Arp-jV2bsE4/s1600/freyja+green+shirt+sitting.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="814" data-original-width="960" height="542" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEOAMrtcvh6aA1EGmKfSSmZQjmboE0p0-weexe8zXVKR4TGEjGewCSB9R_o8TXymT5LKYMlfrH6wQx14xgTi0U7JFPNGACFzFZfJCkq_5sIUcHs2HROAIBSKHF8CMmRvU34Arp-jV2bsE4/s640/freyja+green+shirt+sitting.jpg" width="640" /></a></div>
[Update: a merle Great Dane sits on frost burnt grass. She is wear a green t-shirt and has only one front leg. Behind her is a red garden chair and garden pots and plants. She looks alert but over it. Out of everything my old green t-shirt has been the best thing to cover her wounds and stop bandages from moving.]<br />
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<a href="https://bobisdysautonomia.blogspot.com.au/2017/07/filaments.html">This post is the follow up to my last (Filaments) which was the lead up to her surgery.</a><br />
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"Freyja's temperature is always low, so this represents a fever for her."<br />
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What is it about vets that they instinctively trust the animal and the readings before them? Try to explain something similar to a medical practitioner and you can see the internal eye roll before they hustle you out the door ignored and untreated. So many Dysautonomia patients often have internal thermostats set outside normal parameters. After years stuck at 38C my body now frequently inhabits the region of 35.2- 35.5C. A couple of my regular doctors believe me, but <a href="https://bobisdysautonomia.blogspot.com.au/2013/04/iv-saline-update-weeks-4-5.html">even as I described back when I was getting regular saline IV's</a>, a nurse despite multiple forms of assessment refused to believe her instruments, or me. Mind you even when I told my pacemaker surgeon that I don't process sedation or local anaesthetics properly, it wasn't until I continually woke up mid procedure and in pain, that I was believed. And yet for Fryeja's vet it's not a stress. She simply believes and believes in, her patients. <br />
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It does give me confidence. Not all vets do well with giant breeds. I've seen towering men baulk at touching both Freyja and when he was still with us, Thor. Giant breeds always attract comments about their size ("You should put a saddle on that!"), and it can be off-putting, belying a gentle nature and a breed that still considers itself a lap dog. But practicalities of treating a large animal aside the vet is at ease and just gets on with the job. She walks in comforting and confident and Freyja just goes with the flow. And in turn I feel confident and comforted. I am grateful for that. We go back in today. Maybe I can convince her to give me a litre of fluids and a cortisone shot in my bursitis inflamed hip, when she's done with Freyja's stitches. There definitely seems to be a lot more practicality and in many ways compassion, in veterinary medicine that has been lost in human medicine where all too often the patient is seen as less than, an inconvenience, or even at times the enemy. <br />
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It's been two weeks since her surgery, nearly three from the time we walked in ignorant and free from the worry and stress that has permeated so much of days since. And I am tired.<br />
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So so tired. But we're getting there.<br />
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It's been a rough few weeks and chronically ill bodies don't tend to react well to stress. Life hasn't stopped so we could focus on the one stressful issue. Instead it kept throwing things our way including the sudden loss of my uncle. He was a tough guy. Three bouts of cancer, a heart attack, broken bones and a 70s rock and roll lifestyle that he never really shook. He was a guy who always lived life by his own rules and never mellowed with age. And sitting in front of his casket and listening to his singing and bass playing, quintessential Oz Rock, it felt and continues to feel unreal. And I am still processing. But we're getting there.<br />
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We're getting there<br />
We're getting there<br />
We're getting there<br />
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I keep reminding myself.<br />
Slow and steady wins the race, right?<br />
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Standing in the vet's consulting room going through the procedure for the surgery I was simultaneously trying not to throw up from worry and fighting back tears at the prospect of what lay ahead for her. She didn't know. We were leaving her with strangers to have a life changing operation. We couldn't explain to her. Sucking up the responsibilities of pet ownership is tough when it comes to decisions like these. Realising how much you love the trusting, furry, stink ball in front of you at the same time as you have to watch her go out through the door after signing the paperwork, is even tougher.<br />
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Perceptions of time vary depending on the circumstances in which we are living and the stress of waiting for the phone call felt like an eternity. When the vet finally called it was late. It went longer than expected. She did really well. The scans were clear and the procedure straight forward except for the complications of her size.Would we mind if she went home and had dinner before we came in to see her? Of course. Well not really. Emotional brain wanted to scream no and run straight to the clinic and break down the door. While logical brain knew it was already 7pm, that the vet was also on call and working hideously long hours over an incredibly long working week. We could wait, Freyja could wait, and perhaps more importantly, the vet could go home, see her family and have a breather before the emergency after hours consults started to roll in.<br />
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Thankfully calm and rational Mr Grumpy was in charge of phone calls on the day.<br />
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8:30 pm Freyja was tucked up under a blanket surrounded by hot water bottles and blissfully unaware thanks to the slow steady drip of morphine into her veins. The relief of seeing her was overwhelming. To touch her paw and stroke her muzzle. To have that tangible connection. Then and only then did the vets words seem to take on form. It went well. She was okay. She was in good hands. I went home exhausted but slightly less anxious. Slightly.<br />
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Great Danes aren't supposed to be in tiny country vet clinics. Her 58kgs and long limbs meant only just fitting on the fully extended operating table and a room all to herself for recovery. Similarly the next day she was perched on blankets in the middle of the main surgery room. Allowing her company and after a quick look around at the other inhabitants, clear acknowledgement that her bulk would not fit into even the largest of their cages. A small excited whine, thumping tail and waves of relief. Who knew you could be so excited to hear your dog had peed? Who knew as I write nearly two weeks since the surgery, seeing her pee and poo would continue to excite me. This is much of what the last to weeks have involved.<br />
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Bringing her home has been both nerve wracking and a relief. I have slept on the couch next to her and also jumped out of bed when I've heard her cry out or stumbling around in the lounge. I watch her and clean up after her. We've wrapped meter upon meter of bandages around her torso. And my bum and legs have gone numb from sitting on the floor next to her bed. I am continuously covered in her hair and slobber. And changing her blankets sometimes multiple times a day due to incontinence. I am tired. She is tired.<br />
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But we're getting there.<br />
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I find myself speaking in high pitched excited tones. And soft low comforting notes.<br />
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Every unsteady pee and poo is celebrated. Ever hop/step applauded.<br />
Every moment of discomfort soothed. Ever stress comforted.<br />
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She lays before me in the loungeroom in one of my green t-shirts trying to keep a dressing on her infected drain. We continue to ply her with antibiotics and cuddles and take calls from our vet checking on her progress. She is quieter than normal. In our multiple trips to the vet since the surgery her nervous energy, especially in the presence of other dogs, is gone. I don't know if she's more settled or more over it. Only time will tell. Today we go in again to check the infection and hopefully remove the stitches from the two large wounds that occupy the space left from her now amputated shoulder and leg.<br />
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<a href="https://www.instagram.com/p/BXhjgb2HeDH/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">"All I want is to do is go inside and rest and this annoying woman keeps trying to make me walk." * * Freyja is still not feeling great and pretty meh about the world but we have to keep her up and moving if only in short bursts with much rest in between. It's all a bit slowly slowly but we're getting there. Hopefully the antibiotics are kicking the infection in the wound and she'll pick up again soon. We're both tired but hopeful. She's been my companion for 8 1/2 of the last 11 years I've been ill so I just want my energetic, slobbery pup back. * * [Image: a short video of Freyja a merle great dane wearing a green t-shirt walking a little in the back yard on our Winter frost burnt grass. More a hop walk as she continues to learn how to get around on three legs. At the end she flops tired to ground to look longingly at the back door where her warm bed resides.] * * #greatdane #merle #ilovemygreatdane #tshirt #amputeedog #recovery #tired #exhausted</a></div>
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A post shared by Michelle Roger (@michelle_roger) on <time datetime="2017-08-08T07:23:31+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Aug 8, 2017 at 12:23am PDT</time></div>
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We're all tired.<br />
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But<br />
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We're getting there.<br />
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Michelle<br />
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Thank you to everyone who has sent me and Freyja lovely messages. I keep thinking I'll catch up with them but I realise now it's unlikely. I have read them all but the fatigue and stress has meant all my spare energy has been focused on taking care of her. If you want to keep up to date with how she goes I'll be updating over on <a href="https://www.instagram.com/michelle_roger/">Instagram</a>.Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com2tag:blogger.com,1999:blog-6181780691238814823.post-12264232773928827332017-07-27T13:21:00.002+10:002017-07-27T14:50:31.336+10:00Filaments<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglFXEW57zSxSQCviXvEjXZVfCqil55GXf0tJaHvZ5SFrsyOXjqID30563lnWVhOUbaTCfvuCEQiVLvB1TUV61TRkXW7FPmzm1rHcNW5AJMUCzxYc9p5ToEHUE_WbYtYdexes2o6jz08Iw_/s1600/me+and+freyja+at+the+beach.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="206" data-original-width="274" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglFXEW57zSxSQCviXvEjXZVfCqil55GXf0tJaHvZ5SFrsyOXjqID30563lnWVhOUbaTCfvuCEQiVLvB1TUV61TRkXW7FPmzm1rHcNW5AJMUCzxYc9p5ToEHUE_WbYtYdexes2o6jz08Iw_/s400/me+and+freyja+at+the+beach.jpg" width="400" /></a></div>
[Image: A large merle Great Dane, sits on the lap, or perhaps squishes the legs of a woman with dark hair. The woman in a cream cardigan and sitting on a blue and white patterned throw, is cuddling the displeased Great Dane. They are at a beach with big scary waves. They are sitting on sand near a peace of drift wood and a small creek winds it's way out to see in the top right corner. This is one of my favourite photos of Freyja. She's always been a lap dog and very protective. Though in this case I'm not sure if she was protecting me from others on the beach or seeking protection from the big evil waves.]<br />
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I want guarantees. No, scratch that. I need guarantees. I need to know Option A will lead to Outcome B. One hundred percent. No deviations. No messy odds that allow for Outcome C, D and Z to come into play. I am a tantruming two-year-old demanding my due. I want it and I want it now. Rational thought sweeps in and out to be replaced by panic and screams that it's not fair. And it's not. Even when rational me says it's part of life, emotional me is still in the foetal position. The decision's too big. It's all too quick. But still it must be made.<br />
<br />
She doesn't care. She sleeps on her brown and tan couch as warm Winter sun streams in through the angled blinds. Blinds that hold a layer of slobber. A layer of oil from nose presses and fur. Light comes through the window whose pane is patterned with overlapping nose prints. The top line of which mark her height as clearly as any notch or biro line on a door frame. No matter how often I clean, her presence is announced from front door to back, in oils, slobber and fur.<br />
<br />
Half wrapped in her blanket, legs tucked under pillows she twists awkwardly to look as I emerge from my bedroom. A morning tail wag thumping heavily on the cushion gives rhythm to her excitement. The tangle of limbs uncurl. She flops to the end of the couch in her usual half-stretch half-stand that seems more attributable to an initial emerging from three months hibernation instead of 12 hours over night.<br />
<br />
A warm head moves expertly into position. My hand encloses the top and side of her warm head. Eight years of mornings have made the movement automatic. The coffee machine splutters into life and the crack of the container that holds her breakfast leads to the first signs of excitement. Food, her family coming home after an eternity (otherwise known as any period spent outside the front door) and the occasional pounce at the chicken run to watch them squawk and flutter, her main sources of excitement. A rattle of her lead or her desire to let people, other dogs, birds, the crow that likes to sit on the front gutter, or the occasional unidentifiable sound, know that they have entered her domain, the others.<br />
<br />
She stops at the door quivering. Bowing, before a stretch elongates her body and she yawn-yelps to calm herself. She waits for me to head through, before a burst of excitement zooms around my right hip and heads to her silver bowl. She's looking great the vet said. Could even lose a kilo or two. Yet the lump of meat is inhaled as if we have starved her for weeks. Suck down the food, quick ablutions and a check that the boundaries are secure, before waiting on the door step to return inside. That's where her family is. Or, more importantly, that's where her couch resides.<br />
<br />
Cocooned in the corner of the loungeroom. Soft circular couch. Warm Winter sun. A throne to gaze at both family and the world. Content and unaware.<br />
<br />
I want to know we are making the right decision. We had three. One, do nothing, was discarded immediately. The other two are filled with uncertainty that leaves me sleepless and nauseous. The stress of such big, irreversible decisions do not meld well with a chronically ill body. It's all been too quick. Monday just a double check with the vet. Tuesday the bad news. The big bad. The one that left me crying on the phone to the vet, and Mr Grumpy, on the couch, in my bedroom. Wednesday rapid decisions. Friday, tomorrow, surgery.<br />
<br />
On Monday when the vet, with her keen eye and calm voice mentioned possibilities, I never entertained it'd be the worst one. It was supposed to be nothing. Benign I was prepared for. This. This had been locked away in a place where I'd never find it. This was the sucker punch delivered with a calm, sympathetic voice on the other end of the phone. Bad news evident from the first syllable. From the too early phone call. Monday's "it often comes back unclear" replaced by the removal of any doubt and the clarity of the expert eye. "Aggressive," "high grade," "no clear margins," the hole in my stomach growing deeper and wider with each word.<br />
<br />
I knew I loved her. I knew but I didn't know how deep it ran. I didn't know how deeply she'd wound her way into my being. I sit watching her sleep and try to catch a glimpse of the invisible filaments that bind my heart to the smelly, snoring body opposite. They remain elusive to my eye but are crystal clear in the pain that potential loss creates. So big decisions are made.<br />
<br />
She's in great health for her age. Well apart from the tumour protruding from her leg. Her heart is strong. She looks great. Apart for the collection of feral cells reproducing at an alarming rate and already threading their way through muscle and tendon. She's in great health, apart from the tumour, though we won't know if it's spread until they scan her abdomen and chest while she's under. She's in great health, if you ignore the tumour that you can't ignore.<br />
<br />
It'll give her the best chance. Best chance. Such a pathetic pairing of words. I don't want chance, not even the best one. I want certainty. I want a promise. I want it written in stone. I want to know that when it's all done she'll be back sneaking her head into my hand. That I'll feel the weight of her body pressed against me as I try to hang the washing. That she'll worm her way back into my lap when I sit outside. That she'll still annoy the chickens and and bark at the delivery woman before poking her head between my leg and door frame for a pat and a scratch. That she'll continue to ruin my good clothes with fur and slobber. That she will announce her displeasure at my being out or not getting up early enough, by disembowelling a tissue, or placing items from my handbag outside my bedroom door. <br />
<br />
I want to know she'll be okay. I want her to tell me that it's the right decision.<br />
<br />
I'm not ready to let those filaments go.<br />
<br />
Tomorrow she goes in for surgery and they'll take her right front leg. The leg she holds up to shake hands. The leg she whacks me with when she wants my attention. The leg she touches me with just to make sure I'm still there. Her best chance they tell me. Best maybe. But shit chance, shit option, shitty best chance of all the options. I look at the still growing lump protruding above her ankle, the one that is growing rapidly and now so tender she's not happy even for me to touch. I look at it and know it must be done, even with potential complications, even with the shitty nature that is her best chance. Even if we don't have time to breath between news and decision.<br />
<br />
But for today, there'll be cuddles and belly rubs. She'll be my other walking stick as I move around the backyard. She'll give me side-eye when I cuddle one of the chooks, and bark at the workmen across the road. She'll be excited when Mr Grumpy gets home and when the youngest returns after his long trip to the mail box at the end of the driveway. Today I'll pretend and she'll remain oblivious.<br />
<br />
Tomorrow we'll trust to the experts. Keep positive thoughts even if at present they are tinged with fear and worry. I'll start breathing again after.<br />
<br />
I love my snotty, furry, leaning shadow. <br />
I love the feel of her warm head in my hand<br />
Her weight on my hip<br />
Her continuing belief that she is a lap dog<br />
<br />
Even the snot and fur that have been deposited on and in the laptop on which I type.<br />
<br />
It's going to be okay. <br />
<br />
It's going to be okay.<br />
<br />
It's going to be okay.<br />
<br />
It's going to be okay.<br />
<br />
MichelleMichelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com4tag:blogger.com,1999:blog-6181780691238814823.post-88048454024555793132017-07-19T11:20:00.000+10:002017-07-19T15:37:56.162+10:00The words - 8th Blog Birthday<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUeU4kQgqTEq8EXHoJqeHVUMJYfAGkEpJTTlWHmGs-JmiCAztv27UiPomsKDYqvIHApRjA5wJ8Eb5bnsnk9D1EPY2zmBFrWj6EAbADY7Ai2bOYylGShEVEyWSjKHOF2BdySmHeL-aIR5fN/s1600/8+in+compression+stockings.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="540" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUeU4kQgqTEq8EXHoJqeHVUMJYfAGkEpJTTlWHmGs-JmiCAztv27UiPomsKDYqvIHApRjA5wJ8Eb5bnsnk9D1EPY2zmBFrWj6EAbADY7Ai2bOYylGShEVEyWSjKHOF2BdySmHeL-aIR5fN/s640/8+in+compression+stockings.jpg" width="360" /></a></div>
[Image: a selection of colourful compression stockings create a figure eight. They sit on a dark brown wooden table top desperately in need of some oil.]<br />
<br />
<br />
<br />
I've been blogging for eight years today.<br />
<br />
I have shared 100s of 1,000s of words on this screen. I have 100s of 1,000s more in drafts. Half-formed thoughts, anger and sadness spewed onto the draft screen just to get them out. Disconnected words, floating on the screen trying to find a mate, or a 'the' or an 'and', but none are in sight. Happy words are there too, but they often seem harder. Harder to feel real and less treacle. So those posts tend to sit like a poorly written <i>Hallmark </i>card, waiting to share their joy with others. All the words waiting to be rounded up and directed. All the words that are no longer relevant. All the words that served a purpose. That are no longer needed, though I thank them for their service.<br />
<br />
I go back and read earlier posts and wonder who wrote them. Who was that woman? The one that was both bursting with words and emotions. Who felt alone and scared until she found others in the same spot. Who used language that she would never now use. She knows better, she tries to do better. I read those posts and see a reflection of the newly diagnosed patients of today, and tomorrow. A desperation and relief. When you're drowning not waving, and you want one person somewhere to throw you a life preserver and bring you into the safety of your tribe.<br />
<br />
I see a development in words and beliefs. The fickle nature of illness, of my reaction to it. Healthy reaction. Definitely unhealthy reaction. My reactions are better now. Or at least most of the time. There are times where I cock up. Again and again. Where all I want is to construct a pillow fort and hide away until the world passes. Where I hide from myself and the aspects I want to rip off and toss away. The parts that are tethered by bungee cord, bouncing back no matter how far I throw them.<br />
<br />
I see the change in words. The flow that changed a couple of years ago when cognitive issues passed the brain fog stage to something more. Something that plagues me now as I write, or try to write. Or swear at the screen, my fingers, and my brain. What's that word? That word? You know the word? How do you describe the thing that's naught but a projection caught momentarily on billowing smoke. Hardly tangible to start with just a hint where you hope that that pieces will eventually reveal the gestalt. That hope has a poor hit rate. Maybe 2 out of 7. I walk away, come back, swear, and swear some more. At least that never fails. Swear words are carved in stone and fire from my finger tips and my tongue.<br />
<br />
I move away from illness though in truth it never moves away from me. I've been carving out other parts of me and my world. It's slow work but I'm determined. I have written my experience with illness, with disability, with life for 8 years. It served and continues to serve it's purpose. But the frequent posting that was necessary at the beginning dwindles. I continue to write the words. About different things, thingies, thingamabobs. I write, but the pauses, the breaths are lengthened. The need isn't as strong now, although it may ramp up again. Never say never.<br />
<br />
But the need to document my ups and downs change as I have changed. I look back and want to change words, I would write my experience differently if I was starting now. But my writing now is built on those old words. On those old thinking processes. On the therapy they provided. I want to rewrite the past, but the past is part of me, those words are part of me.<br />
<br />
It's not only my needs and life that have changed. There are names that pop up in the comments again and again. So familiar. And then they are gone. Some who became well and moved on with life. Others who sadly are nolonger here. Regulars who disappeared but still pop in on occasion. Others who disappeared without a trace. I hope they are well and happy. I hope their disappearance meant joy and life. New batches of regulars arise and the community reshapes itself. Friends are made and laughs and commiseration are shared. People pop in and out of lives. Friends who serve a purpose, a need that sometimes we are unaware of at the time. Then they leave or we leave. You drift apart or have a big blow up. Words on a screen can be those friends as can those who read them. And just like a friend they can serve a purpose for reader and writer until they don't.<br />
<br />
I sit here today in my pjs. The water I couldn't keep in my mouth as I tried to swallow a fist full of morning meds dampens my dressing gown. The old brain will start to kick in around 3pm if I'm lucky. That's it's usual time. The Winter sun is coming through the blinds leaving strips of sunshine on the brown carpet. Revealing the need for a long overdue vacuum. Freyja snuffles on her couch and a layer of dog hair and slobber covers my keys. Looking at the screen through one eye I pause and wait for the thought that was interrupted by a loud car outside to continue. Maybe it will or maybe it wont. Maybe it'll pop in again at 3pm or not. Maybe I'll scurry around looking for a pen in my bedroom as the thought finally finds it's way back at 11pm just as I think my brain has shut down and I can finally sleep. Maybe. Words are harder these days. But I'll keep trying.<br />
<br />
<br />
<br />
The words have changed and so have I.<br />
<br />
Though my tendency to ramble is definitely intact.<br />
<br />
Eight years of good, bad, outright crap and the odd shining moment.<br />
<br />
Happy 8th birthday little blog.<br />
<br />
Michelle<br />
<br />
<br />
The line I wrote above about drowning and waving always makes me think of this old 80s song. I loved <i>Boom Crash Opera</i> back in the day. I still do.<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/rzp6sAGz6NE" width="560"></iframe>Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com1tag:blogger.com,1999:blog-6181780691238814823.post-43731017842384685562017-07-08T17:16:00.000+10:002017-11-17T16:00:43.174+11:00When you know better, do better.<div class="separator" style="clear: both; text-align: center;">
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[Image: black typeface on pink background. Words say Do the best you can until you know better. When you know better, do better. Maya Angelou]<br />
<br />
<br />
<br />
Saturday morning I quickly finished off a <a href="https://bobisdysautonomia.blogspot.com.au/2017/06/you.html">new post</a>. The culmination of years of frustration sparked by one of those "straw that broke the camels back" moments. I pushed <i>Publish,</i> hopped in the car and drove to Melbourne to be on a panel as part of <i><a href="http://www.emergingwritersfestival.org.au/event/writing-disability/">The Emerging Writers Festival</a></i>. I caught a couple of the responses on Facebook, but didn't really look at any of my social media platforms, and no email, until today a week and a half later. My post-travel body is still drifting through the many stages of payback that accompany such trips. And my brain is still thick with exhaustion and looming migraine but I decided I could manage a short time of screen glare. Well if I closed one eye and tilted my head to the side. And could keep down coffee. Much much coffee.<br />
<br />
Putting up a post that is a bit more confrontational does come with some predictable risks. You know that it will polarise readers. You hope that it may change some minds. Or at least sow the seeds to begin questioning the status quo. My use of YOU was designed to hit hard. It's difficult to put up the usual cognitive distance that allows a reader to deflect uncomfortable messages when each line addresses you specifically.<br />
<br />
Some rose to the challenge. Some did not.<br />
<ul>
<li>The largest number of responses gave me an internet high five. There are a lot of tired disabled people and allies for whom my words resonated. </li>
</ul>
<ul>
<li>There were the predictable number of people who's responses ranged from "you hurt my feelings" to "I'm never going to help a single disabled person ever again" to "Fuck you, you ungrateful bitch." </li>
</ul>
Then there were the group that give me the greatest warm and fuzzies, and leave me with hope for change.<br />
<ul>
<li>Those who were left feeling really uncomfortable after reading my words, but wanted to know more, who wanted to do better. Who at first sat back shocked. Then processed their feelings and responded with openness. Who approached an emotional and intellectual challenge as a moment to learn. </li>
</ul>
In many ways I feel this last group are my people. I am learning. Or perhaps I should say unlearning and learning. About disability, about ableism, about inter-sectional perspectives, about my place in the community and the world at large. I certainly don't get it right all the time. It can be uncomfortable to have that pointed out. But if you are truly open to learning, and positive change, you have to become comfortable with feeling uncomfortable. And if you consider yourself an ally to the disabled community, you have to listen to our voices even when those voices makes you feel sadness, anger or guilt.<br />
<br />
<br />
<br />
<span style="font-size: x-large;"><b>I</b></span> grew up in a very conservative household. One with little in the way of self-reflection. I pushed against it thanks to two extraordinary teachers I encountered in high school, but as kids often do, I mostly toed the party line. After moving out of home at 17 and finding a new world both complex and beautiful, I began a process of growth. One that continues to this day and will continue for the rest of my life.<br />
<br />
A lot of that growth was painful. But challenging the safety of a very certain and concrete world view is always going to be tough. <br />
<br />
There have been some big changes over the years. World views that are now polar opposites to those with which I was raised. In a way they were obvious and easy. <br />
<br />
It is when you believe you are already enlightened about a certain issue, only to realise you have but scratched the surface or may, despite your best efforts, have gotten it wrong, that the real work begins. And it is work. You have to engage. To read. And read. And read. And listen to the words of those with lived experience. And uplift and promote those voices over your own. It takes time and effort. It is frustrating. And will make you recoil at points. Though the recoil is more often at the safe self-image or beliefs you have held, than the new information with which you are confronted. It's tough work. But work that must be done if you want to be a half-way decent member of what is now a global community.<br />
<br />
Through the process you need to keep a few things at front of mind:<br />
<br />
<div style="text-align: center;">
<b><span style="font-size: x-large;">No one is going to give you a pat on the back for your work. </span></b></div>
<div style="text-align: center;">
<b><span style="font-size: x-large;">Nor should you expect them to. </span></b></div>
<div style="text-align: center;">
<b><span style="font-size: x-large;"><br /></span></b></div>
<div style="text-align: center;">
<b><span style="font-size: x-large;">It is not up to marginalised groups to educate you. </span></b></div>
<div style="text-align: center;">
<b><span style="font-size: x-large;">It is not up to them to suppress their anger.</span></b></div>
<div style="text-align: center;">
<b><span style="font-size: x-large;">To be grateful</span></b></div>
<div style="text-align: center;">
<b><span style="font-size: x-large;">To reframe their lives to make you feel comfortable.</span></b><br />
<b><span style="font-size: x-large;">or </span></b></div>
<div style="text-align: center;">
<b><span style="font-size: x-large;">Give you a gold star for being </span></b></div>
<div style="text-align: center;">
<b><span style="font-size: x-large;">a decent human being.</span></b></div>
<br />
This goes for all of us, including myself. For 44 years I have worked and continue to work. That's part of the human experience. The more I engaged with other people, people with life experiences outside my previous frame of reference, I had to reprocess my views. I had to listen.<br />
<br />
In reality I did have a choice. A choice to withdraw to a safe bubble that reinforced my existing beliefs. I could choose to be selective in what I read and with who I associated. That's the easy and comfortable path. A path many take. But a path I chose to reject. <br />
<br />
It was uncomfortable at times. There was a level of guilt that threatened to overwhelm. How could I have thought <i>that </i>way? Why did no one tell me there was another way? It is challenging to think you know how the world works, and then find there are a billion other worlds you had no idea even existed. And, that your view is kind of shit.<br />
<br />
I type here realising how far removed I am from my childhood and how thankful I am for the often painful change it has taken to get to this moment in time. I know my education is far from complete and many more uncomfortable times remain in front of me. I know I need to centralise and prioritise the voices of those with lived experience from a wide range of communities, many of whom I am yet to meet. I need to listen. Really listen. To sit aside my beliefs, examine my privilege, and take on board new information when it arises. If I find there's another way to move through the world, a better, kinder and fairer way I have to incorporate that into my world.<br />
<br />
As the saying goes, <br />
<br />
"When you know better, do better."<br />
<br />
And the next time you know better, do better once again.<br />
<br />
And the next time, and the next....<br />
<br />
<i><b><u><br /></u></b></i>
<br />
<br />
<span style="font-size: x-large;"><b>A</b></span>nd so we come back to disability. The way society reacts to disability and when disabled people speak, continues to be quite shit. And that needs to change. I am a product of that societal discourse. And trying to reconcile myself, illness and disability has been incredibly tough because of the pity/tragedy/overcoming/bad vs good, disabled person narrative and the way we internalise those negative messages as truth.<br />
<br />
<blockquote style="background-color: white; font-family: Arial, Helvetica, sans-serif;">
<blockquote class="tr_bq">
<span style="font-size: x-large;"><i><b><u>The Social Model of Disability</u>:<span style="background-color: transparent;"> </span></b></i></span><span style="font-size: x-large;"><i><b>The social model sees ‘disability’ is the result of the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers. It therefore carries the implication that the physical, attitudinal, communication and social environment must change to enable people living with impairments to participate in society on an equal basis with others.<span style="background-color: transparent;"> </span></b></i></span><span style="font-size: x-large;"><i><b>A social model perspective does not deny the reality of impairment nor its impact on the individual. However, it does challenge the physical, attitudinal, communication and social environment to accommodate impairment as an expected incident of human diversity.</b></i></span></blockquote>
</blockquote>
<div style="background-color: white; font-family: Arial, Helvetica, sans-serif; text-align: center;">
<a href="http://www.pwd.org.au/student-section/the-social-model-of-disability.html"><span style="font-size: x-large;"><i><b>(Source)</b></i></span></a></div>
<br />
<br />
I worked in health prior to becoming ill, yet I had never heard of <i><b>The Social Model of Disability</b></i> or terms like <i><b>Ableism </b></i>and <i><b>Internalised Ableism or Intersectionality</b></i>. Instead <i><b>The Medical Model</b></i> which concentrates on impairments and paternalistic views, dominated discussions. And whilst I prided myself on patient-centred practice, I realise now as a patient and disabled person, that my professional and personal ideas on the topic are very different. There are elements of life with chronic illness and disability that I would never have even considered as I did not know they existed. My good intentions fell short. Not that I knew. If I could go back now I would change my practice but it shouldn't take personal experience to create that change. I wish the push for patient and personal narratives had been as powerful at the time as it is now. Because lived experience brings a truly unique perspective that should be guiding both medical and disability narratives. That should be guiding the discussion in the media and society at large.<br />
<br />
It was not just my work environment and tertiary education that was lacking. I also had a lifetime of messages around disability and illness threaded through my being, many of them were on speed dial in my head. Every new moment of illness, every new need for help was influenced by those lessons. And I have spent much of the last 10 years untangling them and the harm they have caused.<br />
<br />
<blockquote class="tr_bq" style="text-align: left;">
<b><span style="font-size: x-large;"><i><span style="background-color: white; color: #2c353c; font-family: "source sans pro" , "helvetica neue" , "helvetica" , "roboto" , "arial" , sans-serif;"><u>Ableism</u> is the discrimination or prejudice against people</span><span style="background-color: white; color: #2c353c; font-family: "source sans pro" , "helvetica neue" , "helvetica" , "roboto" , "arial" , sans-serif;"> who have disabilities. Ableism can take the form of ideas and assumptions, stereotypes, </span><span style="background-color: white; color: #2c353c; font-family: "source sans pro" , "helvetica neue" , "helvetica" , "roboto" , "arial" , sans-serif;">attitudes and practices, physical barriers in the environment, or larger scale oppression. (<a href="http://www.urbandictionary.com/define.php?term=Ableism">Source</a>)</span></i></span></b> </blockquote>
<br />
<br />
As a child I was sick. Pain and fatigue, amongst other unsavoury symptoms, were a constant companion from the first day I woke up aged 12 unable to bend my inflamed and swollen hands. I internalised the messages from family, teachers, school friends and doctors that I was weak, morally and physically. I <i>knew </i>I didn't have a real illness, and should shut up and suck it up. Real illness and disability were easy to spot and should be treated with equal parts pity and tragedy. I didn't make the grade with my weakness. Not even worthy of negative illness and disabilities narratives, just derision and constant reference to my pathetic inability to just 'Harden up, Princess". Blame and illness went hand in hand. Even in the classroom when I was unable to take notes or participate in PE, there were no accommodations. I was informed, subtly and often overtly, that I was a pathetic inconvenience.<br />
<br />
<div>
<blockquote class="tr_bq">
<span style="font-size: x-large;"><span style="background-color: white; color: #383838; font-family: "pt serif" , "georgia" , serif;"><b><i>Internalized Abelism: A practice where disabled people internalize the ideas and prejudices of society that see disability as ‘other’, as something undesirable, as tragic and as something to be shunned if not pitied. This in turn results in the disabled person loathing themselves and their bodies. They inherently see themselves as lesser human beings....</i></b></span><span style="background-color: white; color: #383838; font-family: "pt serif" , "georgia" , serif;"><b><i>(<a href="https://disabilityrightsbastard.wordpress.com/2013/04/23/ableism-and-internalized-ableism/">Source</a>)</i></b></span></span></blockquote>
<div>
<br /></div>
<div>
I held onto those lessons each time illness came my way. I now have the name to describe my experience, <i>Internalised Ableism</i>. And there's nothing like whipping up those negative disability and illness narratives into overdrive, and spending my days and long sleepless nights, in self-flagellation. When in my early 30's my genes really kicked in, I relentlessly beat myself up with those lessons. I thrust the cruel words of my youth at myself and as much as I'm loathe to admit it, at others. Thank goodness for therapy. I'm grateful every day that I took the leap and embraced the process. But I still struggled with seeing my experience clearly. I had finally started to work through a lot of my baggage related to illness but disability was something that I couldn't connect to. Something I didn't feel I had a right to connect to. Even as my level of functioning continued to decrease and I was disabled by both my body and the world around me, I was unable to connect the dots.<br />
<br />
<div style="text-align: center;">
<b><i>Internalised Ableism is a cruel beast. One I am still taming.</i></b></div>
<div style="text-align: center;">
<b><i><br /></i></b></div>
<div style="text-align: center;">
<b><i>And it's a burden that none of us should have to bear.</i></b></div>
</div>
<div>
<br /></div>
<div>
It took meeting some incredible disability advocates to point me towards a different way of looking at both disability and illness. And in turn myself. <br />
<br />
I read their words. I availed myself of the wealth of information available on the internet. I read and I listen. Again and again and again. I did, and continue to do the work. I still don't get it all right and I still struggle with certain concepts, but I don't turn away. We are a diverse group, with diverse experiences and beliefs. And it's a lot to process. Ideas around <i>Intersectionality</i> have also come to the fore in recent years. It's a lot to unpack and learn, but again I read and I listen. Because I want to be my own ally, and an ally to others in the community.<br />
<blockquote class="tr_bq">
<br />
<span style="background-color: white;"><span style="font-size: x-large;"><i><b><span style="border: 0px; color: #3a3a3a; font-family: "helvetica neue" , "helvetica" , "arial" , sans-serif; margin: 0px; padding: 0px; vertical-align: baseline;"><u>Intersectionality</u></span><span style="color: #3a3a3a; font-family: "helvetica neue" , "helvetica" , "arial" , sans-serif;"> is a concept often used in critical theories to describe the ways in which oppressive institutions (racism, sexism, homophobia, transphobia, ableism, xenophobia, classism, etc.) are interconnected and cannot be examined separately from one another. The concept first came from legal scholar Kimberlé Crenshaw in 1989 and is largely used in critical theories....</span></b></i></span></span><span style="color: #3a3a3a; font-family: "helvetica neue" , "helvetica" , "arial" , sans-serif; font-size: x-large;"><b><i>(<a href="http://geekfeminism.wikia.com/wiki/Intersectionality">Source</a>)</i></b></span></blockquote>
</div>
<div>
<br />
There are amazing disabled people whose voices I needed to hear. They challenged me (continue to challenge me). So often there'd be an element of what they said that in challenging, also articulated my experience in ways that I had never been able to express before. In ways that made my experience make sense. And that has been a gift. A gift I want for others. For those who want to be allies and for those who are part of, or will be part of, the disability community.<br />
<br />
<div style="text-align: center;">
<b><span style="font-size: x-large;">I am a proud disabled woman today thanks to those</span></b><b><span style="font-size: x-large;"> who have shared their words and their experience. </span></b></div>
<br />
Disability advocates are writing about their experience, attending conferences, and providing education services. Online communities abound as do personal blogs. If you consider yourself an ally you need to engage. The information is there waiting for you to access. Don't wait for or expect us to educate you. You are but one in a relentless wave of questioners and the emotional labour demanded is exhausting.<br />
<br />
<br />
<br />
<br />
<b><span style="font-size: x-large;">I</span></b> choose to challenge and learn for myself, for my children, for all those who still struggling. I choose to challenge and learn for myself that all our efforts combined can one day change the narrative around disability. That others will one day not experience the same harm. I choose to share my voice, my angry and frustrated words, that others may also feel confident to raise their voice and also share their experience.<br />
<br />
And I don't apologise for sharing those words. For sharing my truth.<br />
<div>
<br />
I understand what it's like to have your views challenged. To have to acknowledge your privilege. To feel the first uncomfortable creep. It feels very personal and challenging. I've been there. We all have.<br />
<br />
But that is the point where you can choose to listen and learn, or choose to turn away.<br />
<br /></div>
<div>
<br /></div>
<div>
That's on you, not me.<br />
<br />
<br />
<br />
Michelle<br />
<br /></div>
</div>
</div>
Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com6tag:blogger.com,1999:blog-6181780691238814823.post-35038290001948084902017-06-17T10:34:00.001+10:002017-07-18T14:46:26.437+10:00YOU.<div style="text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFSW5xxa4vnorkce78-42ApXVong0pKiJs8PLBMDXjDRK4hugvQheJ9eZFPeCfp4oKfCncge8H3FOaW2RdRfz79hdFnlbNcTLLli67lArypm6_ZXgZB9v85fs2UfOcuYd3XzOSEq8oWpkJ/s1600/me+in+wheelchair+in+front+of+shed.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="960" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFSW5xxa4vnorkce78-42ApXVong0pKiJs8PLBMDXjDRK4hugvQheJ9eZFPeCfp4oKfCncge8H3FOaW2RdRfz79hdFnlbNcTLLli67lArypm6_ZXgZB9v85fs2UfOcuYd3XzOSEq8oWpkJ/s640/me+in+wheelchair+in+front+of+shed.jpg" width="640" /></a></div>
<span style="background-color: white; font-family: , "blinkmacsystemfont" , "segoe ui" , "roboto" , "helvetica" , "arial" , sans-serif; font-size: 14px; text-align: left;">[Image: a woman in a wheelchair sits in front of a grey shed door in the bright sun. Her hair dress and stockings are all pink her shoes silver.]</span><br />
<br />
<br />
<br />
<br />
I am a disabled woman.<br />
<br />
I am a disabled woman.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
I AM A DISABLED WOMAN.<br />
<br />
<br />
<br /></div>
<br />
And<br />
<br />
I am disabled by you.<br />
<br />
<br />
<br />
<br />
Yes, you.<br />
<br />
You there.<br />
<br />
You who's looking shocked.<br />
<br />
You who thinks, oh she can't mean me?<br />
<br />
You who is starting to feel the slow creep of discomfort and defensiveness.<br />
<br />
<br />
<br />
<br />
You who see <i>inspiration </i>and <i>bravery </i>before I act or speak a word.<br />
<br />
You who feel the sharp pang of pity when I cross your line of sight.<br />
<br />
You who pat me, or tell me in a <i>Play School</i> voice that I'm "doing <i>so </i>good!'<br />
<br />
You who think, she doesn't <i>look </i>disabled. She doesn't <i>sound </i>disabled. She doesn't <i>act </i>disabled.<br />
<br />
You who uses words like <i>overcome </i>and <i>despite</i> when referencing my disability.<br />
<br />
You who see me and think, <i>if only</i> she could be fixed.<br />
<br />
You who's first question is "so what's wrong with you?" or "what did you do to yourself?"<br />
<br />
You who shares Inspiration Porn and simply can't see the problem. "But it <i>is </i>inspiring! Just look."<br />
<br />
<br />
<br />
<br />
<div>
<br />
You who insist that I'm <i>not </i>a disabled woman, I'm a woman with a disability. And insist. And insist. And insist.<br />
<br />
You who tell me that <i>disability </i>is a dirty word.<br />
<br />
You who tell me I am a person, not my disability.<br />
<br />
You who delight in your own perceived enlightenment, because you don't <i>see </i>my disability.<br />
<br />
You who uses words like <i>handicapable, (dis)ability, differently-abled.</i><br />
<i><br /></i>
<i><br /></i>
<i><br /></i>
<br />
Just say the fucking word.<br />
<br />
<br />
<br />
<br />
You who cheer our paralympians, but baulk at forcing businesses to comply with even the most basic accessibility standards.<br />
<br />
You who support accommodating disabled people, until it inconveniences you.<br />
<br />
You who book events in inaccessible buildings. <br />
<br />
You who create businesses with heavy doors, steps, no accessible change rooms and aisles too small or too cluttered.<br />
<br />
You who work in them and say nothing.<br />
<br />
You who see a ramp and think that access is sorted.<br />
<br />
You who gets offended and angry when your failure is explained.<br />
<br />
You who never considered accessibility in the first place.<br />
<br />
You who say, why don't you just ring and check?<br />
<br />
You who cannot understand how exhausting it is to ALWAYS have to ring ahead to check. And that a yes is no guarantee.<br />
<br />
You who think, well disabled people never attend anyway.<br />
<br />
You who cannot conceive that the constant lack of accessible venues becomes a self-fulfilling prophecy.<br />
<br />
<br />
<br />
<br />
<br />
You who think it'll never happen to you.<br />
<br />
You are too virtuous, health conscious, perfect, to ever become disabled.<br />
<br />
You who knows and are, better.<br />
<br />
You who uses the R word or it's derivatives.<br />
<br />
You who tell me why it's not offensive, because it doesn't mean the same thing anymore.<br />
<br />
You who instantly begin making excuses or explanations for perpetrators when I share my stories of Ableism. "But they had good intentions." "But he really means well." "But what about their feelings?" "Let me play devil's advocate for a second."<br />
<br />
You who don't believe Ableism exists.<br />
<br />
You who still don't know what Ableism is.<br />
<br />
<br />
<br />
<br />
You who say, I wouldn't <i>give in</i> and use a mobility aid.<br />
<br />
You who say, oh but I don't mean <i>you</i>. I'm not talking about <i>you</i>. It's okay for <i>you </i>to use one.<br />
<br />
You who use terms like "wheelchair-bound" and "confined to a wheelchair".<br />
<br />
You who feel defensive when I become angry at their use.<br />
<br />
You who ask if I need help, then ignore me when I say "No thanks, I'm fine".<br />
<br />
You who feel entitled to put your hands on me, on my wheelchair, without even the most basic of common courtesy to ask.<br />
<br />
You who feel entitled to ask my medical history.<br />
<br />
You who come up with such <i>unique </i>and <i>witty </i>lines as "that chair could take you to Mars", "Do you have a licence for that?" "The two of you should have a race."<br />
<br />
<br />
<br />
<br />
You who think you are a great ally.<br />
<br />
You who speak of diversity and privilege, but repeatedly fail to include disability in the list of marginalised groups.<br />
<br />
You who speak of embracing your body. embracing your beauty. But fail to include disabled people in your narrative.<br />
<br />
You who talks about embracing difference, when what you mean are the differences you find palatable. Not disability.<br />
<br />
You who rally against violence, unemployment, homelessness and restrictive reproductive rights but never acknowledge that disabled people are frequently over represented in the statistics. That disabled people who also inhabit other marginalised groups are even more at risk.<br />
<br />
You who discount lived experience. What would I know?<br />
<br />
You who think your able-perspective can explain my life better, write my life better.<br />
<br />
You who think your right trumps mine. <br />
<br />
You who believes that in re-centering the narrative around the disabled voice, you are missing out.<br />
<br />
You who speak of diversity but only on your terms.<br />
<br />
You who think you know better.<br />
<br />
You who think we should be grateful.<br />
<br />
<br />
<br /></div>
<div>
<br />
You who think I'm some sort of inspirational saint for simply living my life.<br />
<br />
You who instead expect me to devolve into a puddle of weeping flesh because disability came my way.<br />
<br />
You who think you're a superhero for your vigilante policing of accessible parking spaces.<br />
<br />
You who shout FAKER and refuse to believe the permit sitting on the dash.<br />
<br />
You who still can't understand that invisible disabilities exist.<br />
<br />
You who knows most of <i>them </i>are <i>bludgers</i>, <i>fakers</i>, <i>rorters, leaners</i>.<br />
<br />
You who tell me I'm "lucky that he's stuck around."<br />
<br />
You who think I am so burdensome that I should not expect anyone to want to stay, or, to love me.<br />
<br />
You who reads a story about the murder of a disabled child by a parent, a disabled wife by her husband, and think "Understandable" "Justifiable" "Act of Mercy" "Act of Love."<br />
<br />
<br />
<br />
<br />
You who think I am pretty, articulate, confident,<br />
<br />
<br />
<div style="text-align: center;">
<i><b>FOR</b></i> A DISABLED WOMAN.</div>
<br />
<br />
<br />
<br />
I am disabled by your attitudes.<br />
<br />
By your infantilisation.<br />
<br />
By your low expectations.<br />
<br />
By your erasure, wilful or unintentional.<br />
<br />
I am disabled by you.<br />
<br />
<br />
<br />
By you.<br />
<br />
<br />
<br />
By you.<br />
<br />
<br />
<br />
By you.<br />
<br />
<br />
<br /></div>
<div>
<br /></div>
<div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
I AM A DISABLED WOMAN.<br />
<br />
<div style="text-align: center;">
A proud disabled woman. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
An amazing disabled woman.<br />
<br />
<br /></div>
<br />
I AM A DISABLED WOMAN.<br />
<br />
<br />
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
Michelle</div>
<br /></div>
</div>
<div>
<br /></div>
<div>
<br />
Update: I wrote a post in response to some of the messages I received about this piece <i><a href="https://bobisdysautonomia.blogspot.com.au/2017/07/when-you-know-better-do-better.html">When you know better, do better</a></i>.<br />
<br /></div>
Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com11tag:blogger.com,1999:blog-6181780691238814823.post-33948213695594911112017-06-14T18:20:00.001+10:002020-06-23T10:28:00.855+10:00Yet again I am reminded that the Australian Fashion Industry does not see me.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghKaVrQICvTXLzgVldvws3m1TnaGGWsy_F-DiBsN47qNsXLQ5bDIBM9SgzAbBshoPFeXYICb7zFj7HXf5G0AlA9NfJRpKvFDd0E3hviw0BPdPCdgSLXANCkwAGUcoOm94rRXZFhfvaM30L/s1600/Hungarian+Elle+cover+amputee.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghKaVrQICvTXLzgVldvws3m1TnaGGWsy_F-DiBsN47qNsXLQ5bDIBM9SgzAbBshoPFeXYICb7zFj7HXf5G0AlA9NfJRpKvFDd0E3hviw0BPdPCdgSLXANCkwAGUcoOm94rRXZFhfvaM30L/s640/Hungarian+Elle+cover+amputee.jpg" width="472" /></a></div>
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(<a href="http://www.ellemagazin.hu/">Elle Hungary</a> featured amputee <a href="https://www.facebook.com/RobotGirlReka/">Reka Lukoviczki</a> (<a href="https://www.instagram.com/robotgirl_reka/">aka Robot Girl</a>) on their <i>Love Your Body</i> cover).</div>
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<span style="text-align: start;">This morning I awoke to see </span><a href="https://www.facebook.com/aljazeera/videos/10155467271858690/" style="text-align: start;">a video of a fashion parade in Ethiopia featuring disabled people</a><span style="text-align: start;">. The project created by the <i>Ethiopian Fashion Designers Association</i> included designs by 15 different fashion designers. The clothes were fashionable and stylish. During the accompanying package of the the designers, Tseday KebeDe, spoke about the need to design for disabled bodies. And importantly,</span><br />
<div style="text-align: center;">
<span style="text-align: start;"><b>that fashion is for everyone. </b></span></div>
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</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
<span style="text-align: start;">My usual morning scroll through <i>Instagram </i>showed the stunning Jillian Mercardo gracing another magazine cover (below). This time photography magazine, <a href="https://glass-book.com/" style="font-style: italic;">Glassbook </a><i> </i>In demand, this US disabled model has graced multiple magazines, and been involved in multiple campaigns, including <a href="http://www.vogue.com/article/beyonce-jillian-mercardo-model-muscular-dystrophy">Beyonce's <i>Formation</i></a><i> </i>campaign.<br /> </span></div>
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<a href="https://www.instagram.com/p/BVSTvf5gxDM/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">It's all about the look. On the cover of @glassbook photography @paolo_m_testa styled @sheadaspin makeup @sofichernyak hair @lorenzodiazhair</a></div>
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A post shared by Jillian Mercado (@jilly_peppa) on <time datetime="2017-06-13T16:14:22+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Jun 13, 2017 at 9:14am PDT</time></div>
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A few posts down and the beautiful Leopoldine Huyghues Despointes is featured in the pages of <i>Harper's Bazaar</i> Mexico wearing <i>Dior</i>. The<a href="https://www.vice.com/en_au/article/meet-the-french-artist-actress-using-her-disability-as-inspiration-456"> talented French actress, artist, activist </a>and model, is regularly seen in fashion campaigns.<br />
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<a href="https://www.instagram.com/p/BVS8ATGBlJM/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">Thank you @harpersbazaarmx for the feature! Thank you @dior and @vhernier for making me feel like a queen. Lots of love to @admakawage ❤ Photo by @rpgphoto Styled by @alexandramji #GetYourCopy #IMissMexico #CostaCareyes</a></div>
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A post shared by Leopoldine Huyghues Despointes (@leopoldinehd) on <time datetime="2017-06-13T22:06:11+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Jun 13, 2017 at 3:06pm PDT</time></div>
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<span style="text-align: start;">A quick look around and the trend of including more disabled models in fashion campaigns overseas continues.<br /><br />Model <a href="https://www.instagram.com/oleksandrakutas/?hl=en">Alexandra Kutas</a> made her debut at <i>Ukraine Fashion Week</i> in 2015. She continues to has grace runways is gorgeous designer gowns. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-P9kbEICDixbBf1Utr9RFJg-EXNvpmxwt0WeAktfIO5-MtRx05glMaytuDNjCziZX19Tl19fDaeRnZXEyXcjCX_arZpy1nqVNaT3Ot_Fz1y7afsdRQNiXFzlSSEkyEl5MZxj8MQLTiam2/s1600/Alexandra+Kutas+Ukraine.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-P9kbEICDixbBf1Utr9RFJg-EXNvpmxwt0WeAktfIO5-MtRx05glMaytuDNjCziZX19Tl19fDaeRnZXEyXcjCX_arZpy1nqVNaT3Ot_Fz1y7afsdRQNiXFzlSSEkyEl5MZxj8MQLTiam2/s640/Alexandra+Kutas+Ukraine.jpg" width="410" /></a></div>
<br />
<div style="text-align: center;">
(Alexandra Kutas. Photo Credit <a href="http://sarymsakov.com/">Andrey Sarymsakov</a>, from his <i>Break Their Chains</i> project)</div>
<br />
<a href="https://sheleadsafrica.org/lebohang-monyatsi/">Lebohang Monyatsi</a> (aka <a href="https://www.instagram.com/the_rolling_goddess/">The Rolling Goddess)</a> is gracing runways and photo shoots in her native South Africa.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhB9JeiotGH4e7TUENR1vu44KSoDDe2iKYXvoCBosy6FPPLH1oCzmgEqC09Tli9VDSVduZhk_Jpxf-toPj5kGl1m8x9Oakrsms9ULVUkltNPJ9x7UHewTFZY7qDVgkCDzETcZtTTl1eutoS/s1600/Lebohang+Monyatsi.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="436" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhB9JeiotGH4e7TUENR1vu44KSoDDe2iKYXvoCBosy6FPPLH1oCzmgEqC09Tli9VDSVduZhk_Jpxf-toPj5kGl1m8x9Oakrsms9ULVUkltNPJ9x7UHewTFZY7qDVgkCDzETcZtTTl1eutoS/s640/Lebohang+Monyatsi.jpg" width="640" /></a></div>
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(Lebohang Monyatsi; <a href="https://www.facebook.com/Mabonengfashionweek/">Maboneng Fashion Week 2016</a>)</div>
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Latvian-born, British model, singer, song-writer, DJ and <a href="https://www.instagram.com/viktoriamodesta/">Bionic Pop Artist</a> Viktoria Modesta embraces avant garde. She has graced many a fashion magazine and fashion show and is an ambassador for bespoke prosthetics company <a href="http://www.thealternativelimbproject.com/"><i>The Alternative Limb Company</i></a>.<br />
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<img border="0" data-original-height="600" data-original-width="400" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2QYvMXmq6pRS3rv2IpHV4LL-TZURLnhuNYuenbT4Tm2jjESOVaX5XA_Olm_cR0TwpAaGXhoFJ6E6tP8VX8ku6TfvKwL_Fy9n55aRIEOVn9N6WM30ZlB9HlJ0gXPEeahChjfqT5EyzfYjL/s640/Viktoria+Modesta.jpg" width="426" /></div>
(<a href="http://188.65.113.101/~thealter/?mtheme_portfolio=spike-leg">Image</a>: Viktoria Modesta wearing the Spike Leg, created by Sophie de Olivera Brata and Kaos Art, Fitted at Ability Matters Clinic, Photographed by Ewelina Stechnij and Lukasz Suchorab.)<br />
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Haitian- American blogger <a href="https://mamacax.com/about-4/">Mamacaxx</a> describes herself as "Survivor, Blogger and Role Model". She is also an <i><a href="https://www.instagram.com/alleles/">Alleles</a></i> Ambassador (<i>Alleles </i>manufacture stylish covers for prosthetics.). Her <i><a href="https://www.instagram.com/mamacaxx/">Instagram </a></i>is a stunning fashion journey. She has featured in multiple magazines and continues to dismantle preconceived ideas around what disabled should be and should look like.<br />
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<a href="https://www.instagram.com/p/BRVaOm4gBMr/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">I usually don't do outfit blog post but this faux fur stole gave me so much life, thought I'd share with y'all that they are now $4. Check the blog "London: Winter/Fall must have" for more detail. If they do run out a similar one is available at Romwe. ---------------------------------------- Make sure to download the @liketoknow.it app to receive all my outfit details in your inbox every time you like a post with a #liketoknowit link 😉 #liketkit #mamacax #alleleswomen http://liketk.it/2qCmx 📸: @marianneolaleye __________________________________________</a></div>
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A post shared by Mama Cāx (@mamacaxx) on <time datetime="2017-03-07T11:03:11+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Mar 7, 2017 at 3:03am PST</time></div>
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The fabulous American model <a href="https://www.instagram.com/melaniegaydos/">Melanie Gaydos</a> has featured in multiple <a href="http://www.huffingtonpost.com.au/entry/melanie-gaydos-model_us_5935879fe4b0cfcda9165719">campaigns</a>. In particular high end and experimental fashion.<br />
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<a href="https://www.instagram.com/p/BUCsUdlA713/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">@monsieurcoms 🔥🌹🔥🌹🔥 @assad_illmatic #melaniegaydos #monsieurcoms</a></div>
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A post shared by Melanie Gaydos (@melaniegaydos) on <time datetime="2017-05-13T18:09:53+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">May 13, 2017 at 11:09am PDT</time></div>
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US based artist and model <a href="https://www.instagram.com/caitinkitten/">Caitin Stickels</a> aka Caitin kitten is yet another disabled model demonstrating the beauty of difference. Her <a href="http://www.cosmopolitan.com/entertainment/a9143244/caitin-stickels-cat-eye-model-interview/"><i>V Magazine</i> shoot is simply stunning</a>.<br />
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<a href="http://ugc.reveliststatic.com/gen/constrain/800/800/80/2017/03/16/12/e0/gv/ph6qi411ws2qbwe.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://ugc.reveliststatic.com/gen/constrain/800/800/80/2017/03/16/12/e0/gv/ph6qi411ws2qbwe.png" data-original-height="747" data-original-width="572" height="640" width="490" /></a></div>
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American actress and model <a href="https://www.instagram.com/itsmemsjamiebrewer/">Jamie Brewer</a> (love her in <i>American Horror Story</i>) has walked in <i>New York Fashion Week </i>and been featured in various inclusive fashion campaigns.<br />
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<a href="https://static.independent.co.uk/s3fs-public/styles/story_medium/public/thumbnails/image/2015/02/13/12/Jamie-Brewer-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="423" data-original-width="564" height="480" src="https://static.independent.co.uk/s3fs-public/styles/story_medium/public/thumbnails/image/2015/02/13/12/Jamie-Brewer-1.jpg" width="640" /></a></div>
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These are but a handful of the disabled models working around the world. Featuring in magazines and on runways.<br />
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Australia does have disabled models.<br />
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<a href="http://www.madelinestuartmodel.com/">Madeline Stuart</a> has walked in <i>New York Fashion Week</i> amongst others and has featured in numerous magazines, and now has her own clothing line, <i><a href="https://www.21reasonswhy.shop/">21 Reasons Why</a></i>.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh86Fe2ylZZOxHl-NPWOjdotyr54GiaXbbw5CzPrqjnwzBWbBLSScNA-dnCm18Jemk1wMf1Bd2qEejFuRUY4z6aWZQO6CKo_P1rkj0T7alZ_JEkBtYv7Ko4QJ2bhtE2113pKPxkEMeRnHSZ/s1600/MADELINE+STUART.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="900" data-original-width="1600" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh86Fe2ylZZOxHl-NPWOjdotyr54GiaXbbw5CzPrqjnwzBWbBLSScNA-dnCm18Jemk1wMf1Bd2qEejFuRUY4z6aWZQO6CKo_P1rkj0T7alZ_JEkBtYv7Ko4QJ2bhtE2113pKPxkEMeRnHSZ/s640/MADELINE+STUART.jpg" width="640" /></a></div>
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(<a href="http://www.madelinestuartmodel.com/">Image</a>)</div>
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The lovely <a href="https://www.instagram.com/_angeldixon_/">Angel Dixon</a> recently featured in <i><a href="http://winkmodels.com.au/target-fun-angel-dixon/">Target's </a></i>new campaign and has walked overseas for brands such <i><a href="http://bezgranizcouture.com/">Bezgraniz Couture</a></i>.<br />
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<a href="https://www.instagram.com/p/BTnHx0wBOAN/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">Thank you to everyone who has reached out to express excitement and support for my latest work. I have written a little about it on my blog. https://medium.com/@angeldixon/me-my-cane-and-a-target-campaign-60d9d3a6219c?source=linkShare-6da9f4c750f1-1493773649 @targetaus @triple_j @dylanalcott #model #modelling #disability #inclusion #adinclusion #australia #targetaustralia #catalogue #blogger</a></div>
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A post shared by Angel Dixon (@_angeldixon_) on <time datetime="2017-05-03T01:11:05+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">May 2, 2017 at 6:11pm PDT</time></div>
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Last year model and athlete, the gorgeous <a href="https://www.instagram.com/robynlambird/">Robyn Lambird</a> (I have serious hair envy) also appeared in a <a href="https://thewest.com.au/news/australia/wa-wheelchair-athletes-fashion-ad-first-in-new-target-campaign-ng-ya-118142"><i>Target </i></a>campaign.<br />
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<a href="https://www.instagram.com/p/BTd5bF9hOnt/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">Velvet is so hot right now. #ootd #wiwt #look #shorthair #style #androgynous #cripplepunk #cerebralpalsy #disabledmodel</a></div>
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A post shared by Robyn The Trex Lambird (@robynlambird) on <time datetime="2017-04-29T11:12:29+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Apr 29, 2017 at 4:12am PDT</time></div>
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Yet here in Australia I am yet to pick up a magazine, other than a <i>Target </i>catalogue, and see a disabled model. I can flip through everything from <i>Australian Women's Weekly</i> to <i>Vogue </i>and no where do disabled models appear. (Update: <a href="https://www.facebook.com/turia.pitt/photos/a.793060017451749.1073741828.573983582692728/1358094187614993/?type=3&theater">Turia Pitt is currently on the cover of <i>Australian Women's Weekly</i></a> as the featured interview. Whilst not modelling per se, her position on the front of a such an iconic and well-known magazine is still incredibly powerful given how few people with facial difference appear in, let alone on the front cover, of well-known magazines. Of note her first cover in 2014, was the <a href="http://www.smh.com.au/lifestyle/celebrity/turia-pitt-becomes-most-popular-cover-girl-for-australian-womens-weekly-20141030-11ecoe.html">biggest selling of that year</a>.)<br />
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When brands and companies proudly announce they are embracing diversity, disability is never part of the campaign (Think <i>Vogue's </i>2017 attempt at a <i>diversity </i>cover. Problematic for so many reasons, <a href="http://www.startingwithjulius.org.au/vogues-diversity-cover-the-view-from-the-inaccessible-first-floor/">one of which was their continued obliviousness to disability in their diversity brainstorming</a>. Or local company <i>Myer </i>in 2016<i> </i><a href="http://www.smh.com.au/lifestyle/fashion/myer-launches-spring-collection-in-a-floral-frenzy-20160823-gqz9oc.html">alerting us to their new enlightened direction to move beyond the overwhelming whiteness </a>in their shows. With no mention of age, size, or, disability.) <br />
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<b>Brands continue to pat themselves on the back for embracing different races, plus-sized models and more recently <a href="http://www.smh.com.au/lifestyle/fashion/fashion-week/melbourne-fashion-festival-2017-55yearold-model-steals-the-runway-spotlight-20170315-guz4cb.html">older models</a>, (which is all fantastic) </b></div>
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<b>but disability continually fails to be included in the mix.</b></div>
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Which leads to the question: do disabled people simply not exist in the minds of the Australian fashion industry?<br />
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I am a disabled 44-year-old woman who loves fashion. I use a walking stick and a wheelchair. I wear compression stockings. I dress up nearly every day. I celebrate self-expression through fashion. And I want to see myself and other disabled people represented on the catwalk and in the pages of multiple magazines. I want to know that the Australian fashion industry sees me, embraces me and values my existence. While I did love seeing Angel Dixon in the <i><a href="http://www.startingwithjulius.org.au/michelleroger/">Target</a> </i>campaign recently, I am acutely aware how rare this experience is. With adults with disabilities largely forgotten by the industry.<br />
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I am not alone in my frustration. It is one shared by many other disabled people in Australia. Many of <a href="https://www.instagram.com/michelle_roger/">us, myself included</a>, have not been happy to accept the status quo, instead creating our own fashion world on platforms such as <i>Instagram </i>(<a href="http://www.revelist.com/influencers/instagram-bloggers-with-disabilities/7385">was rather excited to be part of this article by <i>Revelist</i></a>). We share our fashion expression and tips for dressing with style when using various mobility aides. We share knowledge of brands embracing disability (eg <i><a href="https://www.target.com.au/">Target</a></i>, <i><a href="http://people.com/celebrity/nordstrom-catalog-models-with-disabilities/">Nordstrum</a></i>, <i><a href="http://america.aljazeera.com/articles/2016/2/25/the-disabled-models-of-new-york-fashion-week.html">FTL Moda</a></i>) or creating specifically with disability in mind (eg <i><a href="http://bezgranizcouture.com/">Bezgraniz Couture</a>, <a href="http://www.sue-online.nl/">Sue</a></i>, <i><a href="http://www.vblush.com/">Vanilla Blush</a>).</i> We note those companies who see our adaptive needs as a means to express ourselves (eg <i><a href="http://www.alleles.ca/">Alleles</a></i>, <a href="http://www.thealternativelimbproject.com/"><i>Adaptive Limb Company</i></a>, <i><a href="http://lymphedivas.com/">LympheDivas</a></i>, <i><a href="https://www.topandderby.com/">Top and Derby</a></i>, <i><a href="https://www.izzywheels.com/">IzzyWheels</a>). </i> In the process our presence is actively challenging societal perceptions of what disability looks like and how we live our lives. <br />
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<b>Disabled people are actively engaging in fashion. </b></div>
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<b>Why isn't the industry here in Australia engaging with us? </b></div>
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The vast majority of fashion brands including, or actively making clothing for disabled people are still located overseas (with current dollar conversion rates and postage, frequently making them inaccessible to Australian residents).<br />
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When will we see the same push for the inclusion and valuing of disabled people by the fashion industry here in Australia? We are continuing to lag behind the rest of the world when it comes to disabled models on the runway and in fashion magazines. <i>Target </i>and <i>Kmart </i>are still two of the few companies here in Australia including disabled models in their advertising, especially when it comes to adult fashion.<br />
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Organisations such as <i><a href="http://www.startingwithjulius.org.au/">Startling with Julius</a></i> are actively advocating for the inclusion of disabled people in advertising. Thanks to their hard work there has been a slow but perceptible increase in the inclusion of disabled children in campaigns. However adult representation apart from the aforementioned campaigns, remains sorely lacking.<br />
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It's not good enough.<br />
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In Australia 1 in 5 people are living with some form of disability (roughly 4,756,000 people). Why aren't we represented in advertising, in magazines or on the catwalk? Overseas numerous fashion weeks and magazines are including disabled models. From Russia to Ethiopia, South Africa to Mexico, Japan, the USA, Hungary, the Ukraine, the UK, the Netherlands, the list goes on, all have included disabled models. If they can see the value of inclusion and embrace the beauty of difference why don't we?<br />
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I ask the Australian fashion industry once again,<br />
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"Why don't you see me?"<br />
<br />
Michelle<br />
<br />
Musical accompaniment had to be the amazing Viktoria Modesta with <i>Prototype</i>.<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/jA8inmHhx8c" width="560"></iframe>Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com0tag:blogger.com,1999:blog-6181780691238814823.post-48099097202593660612017-06-09T13:56:00.002+10:002017-06-09T13:56:39.006+10:00Of imaginary Fjalkinge storage units and Eket cabinet combinations.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinFRl0Ry58bW4OsHAqwNTkKO9JfB81wr9XJP_YAb7lg1D6yBiYzL95IhPj-hDrrgiIjOO37YpkuAVaWpzzaoCMO_SRqED5EGCPllatNWRev5rUY-5NYIeguG14c_X0Ahfhkci8Q_ZWYf8W/s1600/Freyja+jumping+on+me+in+back+yard.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="960" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinFRl0Ry58bW4OsHAqwNTkKO9JfB81wr9XJP_YAb7lg1D6yBiYzL95IhPj-hDrrgiIjOO37YpkuAVaWpzzaoCMO_SRqED5EGCPllatNWRev5rUY-5NYIeguG14c_X0Ahfhkci8Q_ZWYf8W/s640/Freyja+jumping+on+me+in+back+yard.jpg" width="640" /></a></div>
[Image: A large Great Dane by the name of Freyja excited jumps on me while I try to take a photo. I am foolishly sitting on the grass in the backyard which is prime pummelling position according to Freyja. Only my pasty legs, top of my pink head and a red rose hair clip are visible above her merle back and rear end. In the background in a red chair and a blue topped wooden cable spool (on the left) turned on it's side for a table. A folded red umbrella protrudes from the top of the table and a collection of plant pots are on the top of the table. In the background is a grey wooden fence trees and more pot plants. Variations of this scene populates most of my #upanddressed photo attempts.]<br />
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Sometimes I manage to convince myself that I've got all my shit in a pile. I look around the room and studiously avoid the spots where my shit lies in tangled heaps. Strung from picture hooks and curtain rails. I place my hands over my eyes where I can't avoid the pieces dangling from the light fixture like sneakers hanging from overhead power lines. I ignore it's shattered remnants that lie down the hallway and across the kitchen bench, leading to a haphazard selection of stepping stones trailing out the back door and into the backyard. I zig zag around the pieces and find the spot in the yard where I can fix my eyes on the back fence where no piece of the shit shamozzle hangs.<br />
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I sit on the ground and ignore the pieces that jut into my crossed legs and breathe in the illusion of control and organisation. Stare straight ahead. Eyes fixed on the whorl in the grey weather-beaten paling. Trace the lines that never quite connect. Separate dark grey from light. Ignore the piece of spider web that covers the edge. It's all about perspective. Crop the picture in my minds eye. <i>Vignette </i>and <i>Tilt Shift</i> my new best friends.<br />
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Ignore the internal shaking that heralds the fall. Ignore the greying vision that sweeps in and out. Unless of course they add to the filter. <i>Inkwell</i> or <i>Willow</i>? Remove the colour, as the colour drains from my face once more.<br />
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Exhaustion probably isn't the best lens to look through.<br />
<br />
To act through.<br />
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I look back at the last few weeks and try to pin point the cause. Is it the new med? I've been slowly titrating my dose. But the side-effects have been creeping up the closer I get to my goal dose. First a whisper and then a scream. I can no longer ignore them or stuff them away. Is it the pain? It's been far worse of late. With the added joys of tweaking my back and screwing my neck in the middle of a cat-cow yoga move that weeks later still hasn't fully let up. Is it the gastric issues? Everything is hurting of late. And nothing is coming out. I dread eating but force myself to fuel the machine. Is it the vertigo that has started with the neck injury? Not shocking but enough that movements feel slow and deliberate all the time. Is it the blood pressure that has been more labile than usual. The overall malaise that suffuses my being. All of it is present and at different times each forces it's way through the crowd to demand the most attention. A constant barrage of complaints with each demanding it's moment in the spotlight, but it's duets and chorus all the way.<br />
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And my shit falls from my arms as I try to carry it all. I tell myself I've got it but in reality I haven't. My body is fickle. This disorder, this illness, the genetic shitfight that weaves it's magic through viscera and bone, demands my undivided attention. A toddler screaming in the ailse at <i>Woolies</i>, it wants what it wants and it wants it now. It'll wear me down until I acquiesce.<br />
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No matter what I tell myself.<br />
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But still I cling to the fallacy. <br />
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A selection of <i>Ikea</i> storage solutions dot the rooms of my imagination. My shit is neatly stored in a series of <i>Fjalkinge</i> storage units and <i>Eket</i> cabinet combinations. My floors and walls unmarred by their strewn presence. And all is well with my little world of denial.<br />
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I pop on a dress and pretend that an hour out wont set me back further. I recline the chair in the car and drive to the next town to do a spin around <i>Kmart</i> and the purchase of some unnecessary accessories. Sending me to bed to drool comatosed on my pillow for hours.<br />
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I take a snap shot and add the filter. I crop and blur. I'll live my life in pieces that'll never meet up.<br />
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Because my shit is in it's neat little pile. Can't you see? <br />
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Well except for all the times that it isn't.<br />
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Michelle<br />
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Listening to a lot of PJ Harvey of late. Playing it loud and singing badly. Apologies to my neighbours.<br /><br />
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/migoFnJXprc" width="560"></iframe>Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com1tag:blogger.com,1999:blog-6181780691238814823.post-34012639413225610102017-03-30T16:21:00.003+11:002017-03-31T10:31:56.163+11:00Metamorphosis: Marketing Medical Compression as Fashionable and Transforming the Narrative around Disability and Illness. <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiszI0W8Fe0RK2CVyIyahru3TAnsQiY0eb6-foIV1GBtX65zsGrlz_UJD-JXv9BK_nEI_7BTfPcYULSrRyiJ5JQtdkI618unFy9xEL50h9RZlGgTUPaaFUjyl3FJLbIMNllxc02sju0sFQI/s1600/me+stocking+9+shot.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiszI0W8Fe0RK2CVyIyahru3TAnsQiY0eb6-foIV1GBtX65zsGrlz_UJD-JXv9BK_nEI_7BTfPcYULSrRyiJ5JQtdkI618unFy9xEL50h9RZlGgTUPaaFUjyl3FJLbIMNllxc02sju0sFQI/s640/me+stocking+9+shot.jpg" width="640" /></a></div>
[Image: Nine photos 3x3 showing me wearing a variety of colourful compression stockings in a variety locations. The photos are all from the last year and reflect my changing hair colour from green to purple to pink. I am seated, in my wheelchair and standing with my walking stick.]<br />
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<b><i>Note: The </i>Juzo<i>, </i>Mediven<i>, and </i>Sue<i> websites I've linked are not in English. Each page should give you a translation option, otherwise there is a translation icon that should pop up in the right side of the URL bar.</i></b><br />
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Recently, the promotional video for the new season trend colours, was<i> </i>released by the German arm of compressionwear company, <i><a href="http://www.juzo.com/de/">Juzo</a>. </i><br />
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I sat watching with a huge grin on my face. Not only were the colours fabulous (<i>Happy Red</i> is a personal favourite), but the promotional video and the <a href="https://www.youtube.com/watch?v=uxQiByizpo4">behind the scenes short film</a> both framed medical grade compression in an energised, stylish, more inclusive and fashionable manner, not unlike what you would see for any fashion brand. A rarity in a market that sees clinical practicality as it's primary driving force.<br />
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This is not the first time I have been struck by <a href="http://www.juzo.com/de/"><i>Juzo's </i></a>attempt to merge fashion into the medical grade compression world. In 2015 they released a similar video for their <i>Urban Jungle</i> range (below is the behind the scenes video for the range).<br />
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(The 2015 campaign sent me in search of their products. And the bright Kings Cross Yellow in particular became a favourite that I frequently wear.)<br />
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Both videos have moved medical grade compression stockings from the clinical, sterile, medical domain to a fun, stylish and normalised aspect of life. There is also a move away from a product primarily aimed at an elderly market (mind you 43 or 73 I want a bit of wow in my compression stockings) or a practical work component (eg nurses often wear compression stockings as they are on their feet all day).<br />
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<i>Juzo </i>are not the only company to actively seek to reposition their compression stockings away from a purely medical product to a fashionable product. <i><a href="https://www.medi.de/">Mediven </a></i>showcased their <i>Elegance </i>range at <i>Berlin Fashion Week 2016</i> (read more <a href="https://www.medi.de/produkte/highlights/fashion/catwalkhighlights/">here</a>). I love their write up and the photos showing how integrating medical grade compression and stylish fashion can be effortless and looks fantastic.<br />
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Both the <i>Juzo </i>and <i>Mediven </i>campaigns are exciting. They mark a distinct move in the market: where fashion has become an important part of design. This is a move that those of us who purchase these products have been seeking for a long time. It also represents a realisation that real people are wearing their products and that fashion matters to those wearers. This is a distinct move from a traditional medical products market that has historically designed for, and targeted, large organisations who's purchasing guidelines are based on practicality and fiscal responsibility. <br />
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The disability and illness communities have their own purchasing powers and no longer rely exclusively on organisations to provide them with products such as these. The proliferation of online shopping means that we are no longer beholden to the dictates of the medical system where we are told what is on offer and what we will receive. In a sense the middle man is removed from the equation and some companies are recognising that they need to market to the individual user. Though cost continues to be a limiting factor for many on low incomes and for those of us living in the Southern Hemisphere where postage and a poor $AU can create an added level of financial burden. <a href="https://bobisdysautonomia.blogspot.com.au/2016/07/fashionable-compression-stockings-2016.html">Options to decrease costs and source sales are available but it can be time consuming.</a><br />
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They also change the narrative around a product that is often associated with a negative representation of increasing age or illness. A necessary evil that many must purchase, but hate due to the illness they represent, and a previous lack of attention to their aesthetic value that firmly places them into a hospital or medical model. <br />
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In reality, compression stockings increase functionality. As a long term user for me they represent an increase in endurance and a reduction in pain and swelling. They help to reduce my symptoms and in so allow me to do more. They add to my overall level of functioning and in turn aid me in getting the most out of life. And with these new ranges they can also be integrated into my personal style. A win on many levels.<br />
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<a href="https://www.instagram.com/p/BOGVMDPARYU/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">Out the front of our local where we tend to always go for date night. You can see the stockings better in this one. They are @sigvaris (although @Jobst) do a similar pair). It can be hard to style #compressionstockings in Summer or it you're going out but it is possible. I wear them with shorts and dresses all the time. I don't pretend to have any fashion styling prowess, I simply wear what works for me, but if you are confident and forget they are a medical product it is possible. Especially with all the fashion options avaliable these days (check out my blog for links and reviews). * * I also take inspiration from fashion bloggers I love like @ladymelbourne who made me really think about personal style and confidence to take a chance and embrace what I really love. Or wheelchair and diasbled fashionistas like @itslololove and @cur8able (the idea of lengthening limbs when sitting by simple tricks like pushing up sleeves on a jacket are gold). And I broke out my high heels again in part thanks to @angelarockwood_official. There are so many amazing disabled and chronically ill fashionistas to take inspiration from. And it is possible to tweak current looks to be disabled friendly with a little thinking outside the box. * * I really wish we could see a more visible disabled presence on runways here in Australia. I wish we could see disabled fashion presented like you would any other (@IZadaptive did a great campaign this year but are sadly closing). The importance of that visible presence can't be underestimated for disabled and able-bodied alike. * * Fashion is for everyone and should be accessible for everyone. Across a whole host of styles for people who like fashion as a medium of self expression (gosh I love @viktoriamodesta avant-garde looks) or simply want to frock up on occasion. We aren't a niche. We are consumers with cash who want to wear fashionable clothes. #dysautonomia #chronicillness #disability #fashion #frockingup #fashionblogger #ootd #wiwt #everydaystyle #40plusstyle #wheelchair #wheelchairstyle #wheelchairfashion #disabledfashion #disabledstyle #streetstyle #ruraldisability #ruralstyle #ruralfashion #Australia #gippsland #upanddressed</a></div>
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A post shared by Michelle Roger (@michelle_roger) on <time datetime="2016-12-17T00:56:21+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Dec 16, 2016 at 4:56pm PST</time></div>
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<b><span style="font-size: large;">Fashion can increase usage rates.</span></b><br />
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Like many Dysautonomia patients I wear medical grade compression stockings every day. Prior to any pharmacological intervention they form an important component of first line treatment, alongside increased salt intake, increased fluids and a graded exercise program. We know that peripheral vascular flow is frequently impaired, as seen with visible blood pooling and swelling in lower limbs, and that this is part of a systemic process that contributes to many of the symptoms patients experience.* However, the implementation and continuation of this management technique is often low.<br />
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Compression stockings are notoriously difficult to don and remove even with the various techniques and devices offered. They are also hot, a significant problem when you have a disorder in which thermoregulatory control is often impaired. <br />
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<b><i><b><i>But by far the biggest complaint regarding medical grade compression stockings is related to how they look. </i></b></i></b></div>
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Despite doctors frequently prescribing compression stockings to treat issues such as poor venous return or oedema there continues to be a lack of knowledge about fashionable options. Patients may be given a pair of white TED stockings during a hospital stay, or head to their local chemist and find information about black, white, beige and perhaps navy. But any discussion of fashion tends to be confined to lamenting it's lack in the compressionwear market.<br />
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<a href="https://www.instagram.com/p/BJM7ETHAW-Y/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">A close up of my #compressionstockings from @rejuvahealth (sadly I don't think they make these particuar ones anymore) Who says compressionwear has to be dull or nannaish (sorry nannas of the world I think you should have groovy compression stockings too). These are 20-30mmHg so reasonable compression. You do have to search but there are fashionable options avaliable. And if you have to wear them everyday a bit of fashion helps. Even Freyja can't take her eyes off them. #dysautonomia #chronicillness #disability #compressionstockings #ootd #wiwt #40plusstyle #everydaystyle #disabledfashion #cripstyle #disabledstyle #365dayswithdisability #red #fashion #Rejuvahealth</a></div>
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A post shared by Michelle Roger (@michelle_roger) on <time datetime="2016-08-17T07:45:49+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Aug 17, 2016 at 12:45am PDT</time></div>
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I have been <a href="https://bobisdysautonomia.blogspot.com.au/2012/06/compression-stockings-from-beige-to.html">writing about my search</a> for fashionable compression stockings since 2012. At that time I was stuck in the compression purgatory that many patients face. I was given a scribbled prescription from my cardiologist with little to no information. I was to seek out a pair of 20-30mmHg waist high compression stockings. There was no information on brands or where I could source them beyond a vague "ask at the chemist." At my chemist I was met with confusion. Why would a then 33-year-old woman be asking about compression stockings? Were they for my grandmother? I was shown a catalogue of limited styles and ended up with two pairs of very uncomfortable waist high, very practical, black compression stockings. It was a step up from the beige I had been offered originally but depressing all the same. Then in 2012 I found my first pair of coloured compression stockings and a new world opened up.<br />
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Since that time I have shared every fashionable option I have found with readers here on the blog, in support groups and on <i><a href="https://www.instagram.com/michelle_roger/">Instagram</a></i>. It is like a new world opened up. Whilst always a practical medical item at their core, it became apparent that they could be matched to personal style. No longer were they something to be worn with spite and loathing. Instead there was a transformation and a normalisation of a medical product. A way to take back some control of my life from the relentless medical need. And I like many others wore their stockings with increased regularity and in turn increased functioning. (I feel a little like I should we lived happily ever after at this point!)<br />
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<b><span style="font-size: large;">Where is the Disability Representation?</span></b><br />
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The <i>Juzo </i>video features a range of models, including a variety of body types, ages and sexes (although, unlike their 2015 campaign, only white models are used in 2017). I applaud their move towards diversity, something rarely found in the compression stocking advertising, however disability again is missing from the mix. This seems a surprising omission in what is at it's core a medical product. A quick scan of social media platforms such as <i>Instagram, </i>reveal a large population of disabled fashion lovers. The incredible work of <i><a href="http://www.alleles.ca/">Alleles </a></i>prosthetic covers, the beautiful bespoke pieces created by <i><a href="http://www.thealternativelimbproject.com/">The Alternative Limb Project</a></i>, the increase in accessible fashion brands such as <i><a href="http://bezgranizcouture.com/">Bezgraniz Couture</a> </i>or <i><a href="http://www.sue-online.nl/">Sue</a></i> flourish thanks to a huge fashion loving disabled market seeking more fashionable options.<br />
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Disability representation for a product like medical compression should be part of any advertising campaign. And while the overall feel of this new wave of campaigns is very positive the neglect of a key group in the market is disappointing. I am cognisant that some of the models in these campaigns may have an invisible disability, I know prior to my need for mobility aides I looked very healthy despite my underlying medical issues, but the importance of visibly disabled models in campaigns such as these cannot be underestimated. Visibility changes how society feels about disability. Visibility changes how we feel about ourselves. I both love these campaigns and fully embrace the change in narrative surrounding a product with what could only be described as a PR problem, but I am disappointed that a disabled model is not part of the mix.<br />
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Advertising is often framed in terms of aspiration, in the case of the <i>Juzo </i>and <i>Mediven </i>videos a fun, stylish and energised life. Surely we as one of the largest user groups of these products, we should be included in this aspirational narrative. I know that many disabled fashionistas are living fun, stylish and energised lives, our inclusion seems obvious. While at a grass roots level we are gaining momentum in changing how we are viewed by choosing how we are representing ourselves, it would be nice for brands to come on board and follow our lead.<br />
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<a href="https://www.instagram.com/p/BQC7zVUAjsU/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">#upanddressed for date night. Red is my favourite colour. And tonight I busted out my Dorothy shoes. Made them back in 2010 and they became the brand for my blog. Then in 2013/2014 I did a year long fundraiser for Dysautonomia research here in Australia where I wore them to every appointment for a year ($5,500 raised). They've been sitting on my shelf since. A reminder of telling illness to go F itself. Plus they're covered in red glitter so they are awesome. My left ankle is throbbing from pain but glad I busted them out. * * Dress was an @asos_au sale bargain at $20. Stockings are old @allegro. Earrings are $1 sale bargins from @targetaus. Shoes made by me.</a></div>
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A post shared by Michelle Roger (@michelle_roger) on <time datetime="2017-02-03T10:19:35+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Feb 3, 2017 at 2:19am PST</time></div>
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<b style="font-size: x-large;">Where to from here?</b><br />
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Companies such as <i>Juzo </i>and <i>Mediven </i>are slowly changing the narrative around compression stockings. However, awareness and availability of fashionable compression stockings desperately needs to increase. <br />
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Even with fashionable products available in the market, their lack of visibility and availability, means that the more traditional and basic options continue to dominate and tend to be the only styles offered to new patients. We are stuck in a self-fulfilling prophecy where by patients don't request fashionable items because they don't know they exist and the gate keepers of these products don't stock them. And the gate keepers say that they don't stock them because no one is requesting them. <br />
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Whilst, medical professionals continue to prescribe compression stockings for a range of issues they are rarely aware of fashionable options and they have no idea that they can be integrated into our personal styles. <br />
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It is clear that a wider advertising campaign needs to occur. At present, information about fashionable options are shared patient to patient, on blogs such as this or other forms of social media such as <i>Instagram</i>, or on forums. This informal advertising whilst fabulous, is still haphazard and reliant on luck and at least one patient who spends her nights working her way through <i>Google </i>looking for new fashionable options and tries her hand at styling them. I'd love to see compression brands on more runways and in mainstream fashion advertising. Or taking tips from sporting compression companies such as <i><a href="https://www.skins.net/au/">Skins </a></i>or <i><a href="http://www.2xu.com/au">2XU </a></i>who have moved from elite sporting environment to become household names and found in gyms and sporting fields all around the world.<br />
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<b>And I would love to see disabled models featured in their campaigns. </b></div>
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Like many in my position I spend enough time in the medical system and I have no desire to wear a piece of cold, clinical hospital every day.<br />
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What I do want is something that meets my practical needs but can also be incorporated into my personal style. I am happy to flaunt my bright yellow, or red, or green, or blue, or patterned legs all year round. To wear them with shorts or dresses. To get on with this business of living knowing that I can be both practical and fabulous.<br />
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Reframing a traditional medical product in the new wave of campaigns helps to change how we think about those that wear them. It helps to change how we feel about ourselves. So much of my life and the lives of those around me are dominated by medical needs. Reframing how we think about and relate to items like compression stockings helps to remove stigma and improves how users feel about themselves. Incorporating fashion into practical medical products is a simple way to change these attitudes. And a definite selling point.<br />
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Fashion, medical practicality and disability can coexist. Time for more companies to come on board.<br />
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Michelle<br />
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*There is also evidence of abdominal blood pooling, in particular in Neurocardiogenic Syncope (NCS), and abdominal binders/compression are now often recommended alongside waist high compression stockings.<br />
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Some more resources here on the blog:<br />
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<i style="background-color: white; color: red; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; text-decoration: none;"><a href="https://bobisdysautonomia.blogspot.com.au/2012/06/compression-stockings-from-beige-to.html">Compression Stockings: From Beige to Brilliant </a></i><br />
<i><a href="https://bobisdysautonomia.blogspot.com.au/2016/07/fashionable-compression-stockings-2016.html"><br /></a></i>
<i><a href="https://bobisdysautonomia.blogspot.com.au/2016/07/fashionable-compression-stockings-2016.html"><span style="color: red; font-family: "arial" , "helvetica" , sans-serif;">Fashionable Compression Stockings 2016 Update: Options and Tips.</span></a></i><br />
<i style="background-color: white; color: red; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; text-decoration: none;"><br /><a href="http://bobisdysautonomia.blogspot.com.au/2014/07/rejuvahealth-sheer-floral-and-opaque.html" style="background-color: white; color: red; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; text-decoration: none;">Rejuvahealth Review.</a></i><br />
<i style="background-color: white; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif;"><br /></i><span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif;"></span><a href="http://bobisdysautonomia.blogspot.com.au/2015/02/allegro-microfibre-20-30mmhg-black.html" style="background-color: white; color: red; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; text-decoration: none;"><i>Allegro, Microfibre 20-30mmHg Black Thigh High Compression Stocking Review</i></a><br />
<h3 class="post-title entry-title" itemprop="name" style="background-color: white; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-stretch: normal; line-height: normal; margin: 0.75em 0px 0px; position: relative;">
<a href="http://bobisdysautonomia.blogspot.com.au/2014/02/lymphedivas-compression-gauntlet-review.html" style="background-color: transparent; color: red; text-decoration: none;"><span style="font-family: "georgia" , "times new roman" , serif; font-weight: normal;"><i><span style="font-size: small;">LympheDiva Gauntlet Review.</span></i></span></a></h3>
<i style="background-color: white; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif;"><br /></i><span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif;"></span><span style="background-color: white;"><a href="http://bobisdysautonomia.blogspot.com.au/2012/07/fashion-blogging-is-not-for-faint-of.html" style="background-color: white; color: red; font-family: arial, tahoma, helvetica, freesans, sans-serif; font-style: italic; text-decoration: none;">Fashion blogging is not for the faint of heart</a><br /><br /><span style="font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif;">Goldfrapp's </span><i style="font-family: arial, tahoma, helvetica, freesans, sans-serif; text-decoration: none;">Happiness </i><span style="font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif;">seems an appropriate musical accompaniment as fashionable compression stockings makes me very happy.</span></span><br />
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<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/mnHlGONToIc" width="560"></iframe>Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com2tag:blogger.com,1999:blog-6181780691238814823.post-23359542537597228422017-03-15T15:34:00.001+11:002017-03-15T15:34:17.332+11:00Yes, Disabled People Wear Lingerie.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBYuL581aF4vYCbt7WzgElfTuPAq7TWiA7MsIkSBvo3uuNBCuC-OYW7-vAFKG-2bZ8KlNzGscdVgmXSCnNOvuqekNr7paXufRU83XlP68DnKzk36ukLYJFRWLVTO0XoMzRaQSBrpM-7Uwt/s1600/walkingstick+bra.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBYuL581aF4vYCbt7WzgElfTuPAq7TWiA7MsIkSBvo3uuNBCuC-OYW7-vAFKG-2bZ8KlNzGscdVgmXSCnNOvuqekNr7paXufRU83XlP68DnKzk36ukLYJFRWLVTO0XoMzRaQSBrpM-7Uwt/s640/walkingstick+bra.jpg" width="474" /></a></div>
[Image: black and white photo of a walkingstick in a window with a bra handing from the handle. And because it didn't occur to me to dust, there is a scattering of dead black insects and some cobwebs on the white windowsill.]<br />
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Last year I rolled into a lingerie store to check out a rather fabulous emerald green bra and undie set that had caught my eye in their display window. I rolled around the tightly packed store grazing racks of g-strings and t-shirt bras until the inevitable happened. On the back of Lucille (my electric wheelchair) are a set of handles that allow another person to push the chair if I run out of batteries or become too incapacitated to manage my joystick. I forget they exist 99% of the time. They are behind me and I am highly unobservant even on my good days. The 1% of times are times like that day when, dazzled by the wall of lace and satin, I had deviated 1<span style="background-color: white; color: #545454; font-family: "arial" , sans-serif; font-size: x-small;">°</span> off my safe path and caught a rack of lace teddies on a handle. I promptly pulled the entire rack of teddies to the floor. I stopped mortified as the loud clatter of plastic hangers dwindled into silence. Looked back to find a pile of plastic and lace on the floor and a single sad white teddy hanging haphazardly off one of my handles. I waited for assistance.<br />
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And waited.<br />
And waited.<br />
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The attendant didn't even look at me and I was faced with a set of tight, black clad shoulders that either belonged to the ghost of a past store attendant, or, she clearly had no intention of turning around. Embarrassed and leaning precariously from my chair, I tried to pick up the pile. When it became clear my attempts were going to end in a possible worsening situation, that of an uncoordinated disabled woman plummeting from her chair to take out an even larger display of lace and satin, I leaned back. I twisted. Grabbed the lone teddy from my handle. Hung it back up on the chrome display pole. And rolled out. When I looked back the attendant was clearly relieved I was gone.<br />
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At no point from when I rolled in to when I left did she make eye-contact. She saw me enter, turned her back and continued to speak to the only other woman in the store. I felt like I was back in high school when the cool girls would deliberately ignore my decidedly uncool self. The classic exclusionary tactic employed by teenage girls throughout history: turn your back and continue to talk like the uncool girl never entered the room and doesn't even exist.<br />
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<b>It was clear that I was not welcome. </b><br />
<b>A disabled woman in a lingerie store? </b><br />
<b>No thanks. <br />Too difficult. <br />Too ick. <br />Too "why would a disabled woman even want lingerie?"</b> </div>
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I know I'm not alone in this experience and have had multiple conversations with disabled friends who have felt excluded or discriminated in lingerie stores. People have difficulty with the concept of disability, and in turn interacting with disabled people. But the combination of disability and sexuality makes people profoundly uncomfortable. However that sexuality is expressed, from purchasing lingerie to dating, exploring sexual identities, or participation in different lifestyles, it quickly becomes clear that society doesn't want that connection to exist. (There was a massive blow up on a popular disability site a few years ago when a sex positive story about a disabled adult attending a completely legal sex party in Canada was published. The gentleman in question found it a celebratory, inclusive and empowering event. Responses were clearly split between those who did and didn't have lived experience of disability. Disabled commenters were predominantly happy for him. However, many parents of disabled children, carers, and adults without lived experience of disability were horrified even threatening to report the event and the group to authorities. Similar responses also occur when there is mention of the use of sex workers to aid disabled people in exploring their sexuality.) <br />
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Disabled people are seen as asexual by many. Or undesirable. Or as frequently comes up in comment boards when disability and sexuality are discussed, special snowflakes, or forever children who should not be sullied by icky notions like sexuality. Many simply go straight for the "how could a disabled person possibly consent to sex or any expression of sexuality?" That there are different types of disability, that we could consent, or be taught about bodily autonomy, choice or safe sex practices doesn't even enter the public conscience. That sex is a part of the human condition and should be considered a human right for non-disabled and disabled people alike is rarely discussed. We are not supposed to be confident or feel attractive. We are not supposed to own our own experience. We are to inhabit the realms of pity or inspiration and never dare to mention that our wants and needs are strikingly similar to those who are not disabled. And the idea that we might simply want to wear some hot lingerie that makes us feel confident, for ourselves, not anyone else, isn't even in consideration. The woman in the lingerie store let me know that I wasn't welcome. And she definitely didn't see me as a potential customer. <br />
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Pfft to you rude woman!
I'll spend my dollars elsewhere.</div>
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Yesterday, NZ company <i><a href="https://lonelylabel.com/">Lonely Lingerie's</a></i> new campaign came to light. It stars 57-year-old Mercy Brewer. The photographs show a confident older woman wearing some fabulous sexy lingerie. Stylistically the photographs and the lingerie are no different to what you'd see in a campaign with a younger model. This is not the conservative, stodgy, lingerie we are routinely shown in advertising directed at older women. It is unashamedly sexy. And it is fabulous. It defies so much of the narrative around older women. Women in Mercy's demographic tend to be framed as mothers or grandmothers, and advertising and society tells us there is only one acceptable form of mother/grandmother. I can't help think of <a href="http://www.usmagazine.com/celebrity-news/news/madonna-my-met-gala-2016-outfit-was-a-political-statement-w205344">Madonna wearing a revealing outfit at the Met Gala </a>last year which was met with cries reminiscent of Maude Flanders "won't somebody please think of the children!" As if motherhood or grandmotherhood, or age, (or disability) automatically wipe away a woman's sexuality and self-expression. As a purple-haired, side-shaved, mini-wearing, 43-year-old, disabled woman and mum of two son's, I call BS on that.<br />
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<a href="https://www.instagram.com/p/BReIP9kFVqz/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">'Ageing can bring a quiet confidence unknown in youth, & what use is beauty without the confidence to recognize it in yourself?’ - Mercy Brewer #LonelyLingerie</a></div>
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A post shared by Lonely Lingerie (@lonelylingerie) on <time datetime="2017-03-10T20:19:15+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Mar 10, 2017 at 12:19pm PST</time></div>
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[Image: An older woman leans against a wallpapered wall wearing a black bra. The entire photo is in sepia tones. Text below says "Aging can bring a quiet confidence unknown in youth, what use is beauty without confidence to recognize yourself?" -Mercy Brewer #LonelyLingerie]<br />
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<a href="http://www.thelingerieaddict.com/2017/03/age-beauty-new-campaign-lonely-lingerie.html#comment-1910087">I read a piece discussing the <i>Lonely Lingerie</i> campaign that stated that age was the final frontier of lingerie advertising. </a>I would have to disagree and say that disability continues to be the final frontier as we so hard pressed to find any disabled women, or men, in lingerie campaigns. And an older disabled woman? I swear I belong to a group of mythical women dwelling in a land that time and advertisers forgot. I met a woman just like me at a concert recently. She had no idea that other older, less conventional, disabled women in wheelchairs existed. We bonded on shared experience and anger that we are never represented in advertising, or media, or life.<br />
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While the lack of disabled women in advertising is clear, it is equally apparent that even the concept of such a thing as diverse women's bodies remains controversial (that mythical land of diverse women is pretty bloody full! And only a few hardy adventurers/advertises seem willing to go searching for those far lands.). There is a particular part of society that is vehemently opposed to diverse women who are comfortable and confident living in a body that much of society and the majority of advertising would prefer be hidden away. Add in any hint of sexuality for those who have a different body type from the dominant advertising norm, and people become even more uncomfortable and frequently vicious.<br />
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Today I watched as US company <i><a href="http://liviraelingerie.com/">Livi Rae Lingerie's</a></i> was told that <a href="https://www.yahoo.com/style/lingerie-store-ordered-to-remove-window-display-of-plus-size-disabled-models-214139181.html">their images of diverse body types, including a disabled woman in a wheelchair were in "poor taste" and should be removed</a>. The images show confident women speaking for and about themselves. These women, like the <i>Lonely Lingerie </i>campaign, defy the standard lingerie images we see that use young, thin, white women/teenagers. When this was revealed, an online campaign developed <a href="https://www.facebook.com/LiviRaeGA/posts/1725264410823002?hc_location=ufi">#NoShameLiviRae, and following the overwhelming publicity and backlash, the decision was reversed.</a> How they were in anyway offensive boggles the mind. Stylistically these photos are definitely more on the conservative side of the ledger, especially when compared to the <i>Lonely Lingerie</i> campaign. And still someone got their knickers in a knot (all puns intended).<br /><i><br />Won't somebody think of the children!</i><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhT84JD7cPHMBSox70GCmKwxwk1CLQwyqRXXDJc6QT8UqcwMHmrKtDDDkNsGk9RuhtnH9YQ3F_1h_Oyo3yLeTM9sMg-oYVNTsvaPtYQ9V0kydQtJNRlq01xru2wKU1WkSs-pZgFbEi1mZr-/s1600/woman+in+wheelchair+livi+rae+lingerie.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhT84JD7cPHMBSox70GCmKwxwk1CLQwyqRXXDJc6QT8UqcwMHmrKtDDDkNsGk9RuhtnH9YQ3F_1h_Oyo3yLeTM9sMg-oYVNTsvaPtYQ9V0kydQtJNRlq01xru2wKU1WkSs-pZgFbEi1mZr-/s640/woman+in+wheelchair+livi+rae+lingerie.jpg" width="640" /></a><br />
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[Image: A smiling woman sits in her wheelchair wearing a beige strapless bra and white half petticoat. Caption says: Real Women. "I want to be an example MS or not. People can do what they set their mind to. I always felt the desire to encourage anyone, at any age to never give up and to believe that they are amazing and perfect just the way they are. Even a girl in a wheelchair can be influential" -Stacey Shartley LiviRae Lingerie Ambassador. Livi Rae Lingerie #RealBrasRealWomenRealStories #LiviRaeLingerie]<br />
(<a href="https://www.facebook.com/LiviRaeGA/photos/a.486805561335566.129561.214253948590730/1706129286069848/?type=3&theater">Source</a>: <i>Livi Rae Lingerie Facebook Page</i>)</div>
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These two campaigns are very different. But in both cases the women are confident. They are from groups who are not regularly seen in lingerie campaigns. They are expressing themselves. And owning their lives and their experience. For themselves and not for anyone else. And that makes many people uncomfortable.<br />
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Personally, I love the <i>Lonely Lingerie</i> campaign, and think the company could do great things for disabled representation in the lingerie market. <br />
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<b>I want to see a disabled women shown as a confident sexual being.</b></div>
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<b>I want to see what lingerie may look on a body similar to mine.<br />I want to see her unapologetically owning space and her image. <br />I want to see her giving a big F U to the naysayers. </b></div>
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As an older disabled woman, simply seeing an older woman portrayed in this manner made my heart sing. If I were to see an older disabled woman portrayed in this manner I may break out in song <i>and </i>my best jazz hands and spirit fingers. <br />
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Diversity in advertising makes financial sense. If companies can't make the move because it is the right thing to do. Then surely attracting a wider market that will increase your profits is attractive.<br />
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Diversity in advertising is a powerful tool in changing the way we think about difference in our society. <br />
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Diversity in advertising is also powerful for those who are part of those diverse communities. It says I'm here. I'm not alone. I'm part of the community. And I have value just as I am.<br />
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I'll never go back to the lingerie store where I was ignored. But I do want to buy lingerie that makes me feel confident.<br />
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And I want to buy my lingerie from a company that sees me.<br />
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Michelle<br />
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Sing it JT!<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/3gOHvDP_vCs" width="560"></iframe>Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.com5