Saturday, 17 June 2017

YOU.

[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.]




I am a disabled woman.

I am a disabled woman.

I AM A DISABLED WOMAN.




And

I am disabled by you.




Yes, you.

You there.

You who's looking shocked.

You who thinks, oh she can't mean me?

You who is starting to feel the slow creep of discomfort and defensiveness.




You who see inspiration and bravery before I act or speak a word.

You who feel the sharp pang of pity when I cross your line of sight.

You who pat me, or tell me in a Play School voice that I'm "doing so good!'

You who think, she doesn't look disabled. She doesn't sound disabled. She doesn't act disabled.

You who uses words like overcome and despite when referencing my disability.

You who see me and think, if only she could be fixed.

You who's first question is "so what's wrong with you?" or "what did you do to yourself?"

You who shares Inspiration Porn and simply can't see the problem. "But it is inspiring! Just look."





You who insist that I'm not a disabled woman, I'm a woman with a disability. And insist. And insist. And insist.

You who tell me that disability is a dirty word.

You who tell me I am a person, not my disability.

You who delight in your own perceived enlightenment, because you don't see my disability.

You who uses words like handicapable, (dis)ability, differently-abled.




Just say the fucking word.




You who cheer our paralympians, but baulk at forcing businesses to comply with even the most basic accessibility standards.

You who support accommodating disabled people, until it inconveniences you.

You who book events in inaccessible buildings.

You who create businesses with heavy doors, steps, no accessible change rooms and aisles too small or too cluttered.

You who work in them and say nothing.

You who see a ramp and think that access is sorted.

You who gets offended and angry when your failure is explained.

You who never considered accessibility in the first place.

You who say, why don't you just ring and check?

You who cannot understand how exhausting it is to ALWAYS have to ring ahead to check. And that a yes is no guarantee.

You who think, well disabled people never attend anyway.

You who cannot conceive that the constant lack of accessible venues becomes a self-fulfilling prophecy.





You who think it'll never happen to you.

You are too virtuous, health conscious, perfect, to ever become disabled.

You who knows and are, better.

You who uses the R word or it's derivatives.

You who tell me why it's not offensive, because it doesn't mean the same thing anymore.

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."

You who don't believe Ableism exists.

You who still don't know what Ableism is.




You who say, I wouldn't give in and use a mobility aid.

You who say, oh but I don't mean you. I'm not talking about you. It's okay for you to use one.

You who use terms like "wheelchair-bound" and "confined to a wheelchair".

You who feel defensive when I become angry at their use.

You who ask if I need help, then ignore me when I say "No thanks, I'm fine".

You who feel entitled to put your hands on me, on my wheelchair, without even the most basic of common courtesy to ask.

You who feel entitled to ask my medical history.

You who come up with such unique and witty lines as "that chair could take you to Mars", "Do you have a licence for that?" "The two of you should have a race."




You who think you are a great ally.

You who speak of diversity and privilege, but repeatedly fail to include disability in the list of marginalised groups.

You who speak of embracing your body. embracing your beauty. But fail to include disabled people in your narrative.

You who talks about embracing difference, when what you mean are the differences you find palatable. Not disability.

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.

You who discount lived experience. What would I know?

You who think your able-perspective can explain my life better, write my life better.

You who think your right trumps mine.

You who believes that in re-centering the narrative around the disabled voice, you are missing out.

You who speak of diversity but only on your terms.

You who think you know better.

You who think we should be grateful.




You who think I'm some sort of inspirational saint for simply living my life.

You who instead expect me to devolve into a puddle of weeping flesh because disability came my way.

You who think you're a superhero for your vigilante policing of accessible parking spaces.

You who shout FAKER and refuse to believe the permit sitting on the dash.

You who still can't understand that invisible disabilities exist.

You who knows most of them are bludgers, fakers, rorters, leaners.

You who tell me I'm "lucky that he's stuck around."

You who think I am so burdensome that I should not expect anyone to want to stay, or, to love me.

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."




You who think I am pretty, articulate, confident,


FOR A DISABLED WOMAN.




I am disabled by your attitudes.

By your infantilisation.

By your low expectations.

By your erasure, wilful or unintentional.

I am disabled by you.



By you.



By you.



By you.





I AM A DISABLED WOMAN.

A proud disabled woman. 

An amazing disabled woman.



I AM A DISABLED WOMAN.



Michelle



Update: I wrote a post in response to some of the messages I received about this piece When you know better, do better.

Wednesday, 14 June 2017

Yet again I am reminded that the Australian Fashion Industry does not see me.

(Elle Hungary featured amputee Reka Lukoviczki (aka Robot Girl) on their Love Your Body cover).



This morning I awoke to see a video of a fashion parade in Ethiopia featuring disabled people. The project created by the Ethiopian Fashion Designers Association 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,
that fashion is for everyone. 

My usual morning scroll through Instagram showed the stunning Jillian Mercardo gracing another magazine cover (below). This time photography magazine, Glassbook  In demand, this US disabled model has graced multiple magazines, and been involved in multiple campaigns, including  Beyonce's Formation campaign.
 



A few posts down and the beautiful Leopoldine Huyghues Despointes is featured in the pages of Harper's Bazaar Mexico wearing Dior. The talented French actress, artist, activist and model, is regularly seen in fashion campaigns.


A quick look around and the trend of including more disabled models in fashion campaigns overseas continues.

Model Alexandra Kutas made her debut at Ukraine Fashion Week in 2015. She continues to has grace runways is gorgeous designer gowns. 



(Alexandra Kutas. Photo Credit Andrey Sarymsakov, from his Break Their Chains project)

Lebohang Monyatsi  (aka The Rolling Goddess) is gracing runways and photo shoots in her native South Africa.

(Lebohang Monyatsi; Maboneng Fashion Week 2016)

Latvian-born, British model, singer, song-writer, DJ and Bionic Pop Artist Viktoria Modesta embraces avant garde. She has graced many a fashion magazine and fashion show and is an ambassador for bespoke prosthetics company The Alternative Limb Company.

(Image: 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.)

Haitian- American blogger Mamacaxx describes herself as "Survivor, Blogger and  Role Model". She is also an Alleles Ambassador (Alleles manufacture stylish covers for prosthetics.). Her Instagram 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.



The fabulous American model Melanie Gaydos has featured in multiple campaigns. In particular high end and experimental fashion.

A post shared by Melanie Gaydos (@melaniegaydos) on

US based artist and model Caitin Stickels aka Caitin kitten is yet another disabled model demonstrating the beauty of difference. Her V Magazine shoot is simply stunning.



American actress and model Jamie Brewer (love her in American Horror Story) has walked in New York Fashion Week and been featured in various inclusive fashion campaigns.


These are but a handful of the disabled models working around the world. Featuring in magazines and on runways.

Australia does have disabled models.

Madeline Stuart has walked in New York Fashion Week amongst others and has featured in numerous magazines, and now has her own clothing line, 21 Reasons Why.


The lovely Angel Dixon recently featured in Target's new campaign and has walked overseas for brands such Bezgraniz Couture.



Last year model and athlete, the gorgeous Robyn Lambird (I have serious hair envy) also appeared in a Target campaign.

A post shared by Robyn The Trex Lambird (@robynlambird) on


Yet here in Australia I am yet to pick up a magazine, other than a Target catalogue, and see a disabled model. I can flip through everything from Australian Women's Weekly to Vogue and no where do disabled models appear. (Update: Turia Pitt is currently on the cover of Australian Women's Weekly 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 biggest selling of that year.)

When brands and companies proudly announce they are embracing diversity, disability is never part of the campaign (Think Vogue's 2017 attempt at a diversity cover. Problematic for so many reasons, one of which was their continued obliviousness to disability in their diversity brainstorming. Or local company Myer in 2016 alerting us to their new enlightened direction to include ethnically diverse models in their shows.With no mention of age, size, or, disability.)

Brands continue to pat themselves on the back for embracing different ethnicities, plus-sized models and more recently older models, (which is all fantastic) 
but disability continually fails to be included in the mix.


Which leads to the question: do disabled people simply not exist in the minds of the Australian fashion industry?

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 Target campaign recently, I am acutely aware how rare this experience is. With adults with disabilities largely forgotten by the industry.

I am not alone in my frustration. It is one shared by many other disabled people in Australia. Many of us, myself included, have not been happy to accept the status quo, instead creating our own fashion world on platforms such as Instagram (was rather excited to be part of this article by Revelist). We share our fashion expression and tips for dressing with style when using various mobility aides. We share knowledge of brands embracing disability (eg Target, Nordstrum, FTL Moda) or creating specifically with disability in mind (eg Bezgraniz Couture, Sue, Vanilla Blush). We note those companies who see our adaptive needs as a means to express ourselves (eg Alleles, Adaptive Limb Company, LympheDivas, Top and Derby, IzzyWheels).  In the process our presence is actively challenging societal perceptions of what disability looks like and how we live our lives.

Disabled people are actively engaging in fashion. 
Why isn't the industry here in Australia engaging with us? 

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).

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. Target and Kmart are still two of the few companies here in Australia including disabled models in their advertising, especially when it comes to adult fashion.

Organisations such as Startling with Julius 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.

It's not good enough.

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?

I ask the Australian fashion industry once again,

"Why don't you see me?"

Michelle

Musical accompaniment had to be the amazing Viktoria Modesta with Prototype.

Friday, 9 June 2017

Of imaginary Fjalkinge storage units and Eket cabinet combinations.

[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.]


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.

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. Vignette and Tilt Shift my new best friends.

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. Inkwell or Willow? Remove the colour, as the colour drains from my face once more.

Exhaustion probably isn't the best lens to look through.

To act through.

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.

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 Woolies, it wants what it wants and it wants it now. It'll wear me down until I acquiesce.

No matter what I tell myself.

But still I cling to the fallacy.

A selection of Ikea storage solutions dot the rooms of my imagination. My shit is neatly stored in a series of Fjalkinge storage units and Eket cabinet combinations. My floors and walls unmarred by their strewn presence. And all is well with my little world of denial.

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 Kmart and the purchase of some unnecessary accessories. Sending me to bed to drool comatosed on my pillow for hours.

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.

Because my shit is in it's neat little pile. Can't you see?

Well except for all the times that it isn't.

Michelle

Listening to a lot of PJ Harvey of late. Playing it loud and singing badly. Apologies to my neighbours.