Nodel Life

No, it’s not a typo.

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…am I a nodel?

Yesterday, waiting for a coffee-to-go in busy Gisborne, I flicked through the local rag.  I saw an article ‘Brands Waking to the Appeal of Real Women’ about recent research into fashion marketing.

[I don’t use the word ‘real’ myself, because all women are real women, regardless of size. I prefer the term ‘regular’].

The studies focused on the relationship between the type of models brands employ and people’s buying behaviour. The specific focus of the research was the use of diverse models. The article referred to these recent entrants into fashion circles with the slang term ‘nodels’  as in, ‘not-models’.  Pictured was one of the most iconic plus size models in recent years, Tess Holliday.

Research uncovered a desire for brands to promote images that reflected greater diversity and signalled that they felt this would lead to greater brand trust and longer-lasting consumer relationships. The media and brands are waking up to this…
from Suzanne Winfield, New Zealand Herald 26th December, 2016

‘NODEL’ stuck in my brain. I didn’t consider the ‘nodel’ label offensive; it’s just another nonsense word. But I mused for a bit about how I must be a nodel, and about how close the word nodel is to nodule, a very unattractive thing, or to noddy, something I am, often!

The word also made me think about the modelling work I have done.  Was I ‘not-modelling’ during those shoots?  Was the photographer ‘not-shooting’ and the makeup artist ‘not-making-up’? Was the job ‘not-selling’ clothes? No.
So the ‘not’ part must refer to the industry aesthetic attached to the word ‘model’.  To how I look, not what I do.

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I don’t look like a typical straight-sized (ie. size 6-8) model, I look like a regular woman.  I’m grateful to, and I don’t think nodels like me need a different label. Can we not all be models if we do modelling work? A simple thought to thunk, as my friend Pooh would say.  A mannequin is a mannequin regardless of it’s size. Come on fashion aesthetists, get with the program.  We all buy fashion, all sorts of bodies, it makes perfect sense that we want to see fashion modelled on bodies like our own.

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Today when I got home from our long Christmas road trip I was greeted by a package from Euphoria Design (thank you Monique and crew).
This beautiful New Zealand fashion label design clothes for women size 10-24.
Earlier this year they ran a model search called ‘Confidence is Beautiful’. You may have seen my post all about it. The shoot was about showing the relationship between inner confidence and beauty. It was about people like you and me. It was such a great concept! I was lucky enough to be selected along with nine other gorgeous kiwi women. We were from all over the country and all walks of life, we were many variations of ‘woman’. I made some wonderful friends that day, was spoilt rotten and enjoyed a glamorous shoot in a new season Euphoria Design dress.

Today, in that parcel was a cute framed shot from that day and a memory stick with all my photos, I’ve been waiting for them since our shoot and it is so cool to be able to at last share them properly on here! My Nodel Life! Haha! Seeing the pictures again brought back all the fun of the day and made me feel proud to be a nodel/model (whatever!) and a regular female of the human species.  I couldn’t be happier about being part of the movement for greater visibility in fashion media. We need to see more regular bodies. Our daughters need to, too. Desperately.

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PS. How gorgeous is this print?  The photos are black and white and don’t show the Navy and Milk white print in it’s true form, but it is such a fresh summer print. I love it, and unlike most ‘nodelling’ jobs, this time I got to keep the dress! I know!  Lucky!

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Do you like seeing bodies like yours in fashion media?
If you do, let your favourite brands know!

Precious: One Ring to Bind Them All

Gollum and his Precious hung out with our family over the past week.  We’ve been listening to the BBC audiobook of the Hobbit, during car travel. It’s a brilliant way to stop sibling rivalry; school holiday road trips usually mean backseat disputes, but Tolkein’s storytelling mastery got us there and back without a single spat. I was enraptured and horrified all over again as Gollum keened for his precious ring; obsessively muttering to the object of his fascination, his precious, magical ring. He polished it so much, turned it over so often that it began to form a persona of it’s own. It became his companion, his torture, the cause of such a myopic world view that he stayed beneath the mountain, keeping to himself, convinced in his own circular thinking that the ring was his everything.

Image source_ freecodesource.com

And while the school holidays and The Hobbit have been occupying part of my brain, in the background I’ve been doing a lot of thinking. About accessibility, what it means.  And about disability and what that means.  My views on all of these things have changed over time, broadened, really.  I suspect I will continue to work on them as I grow up (!)

Before I got sick, six years ago, I was a typical able bodied person. I took for granted my abilities to get around and I experienced very little difficulty getting access to the goods and services I needed. By the end of last year, walking the length of a carpark was out of the question.  Standing for more than five minutes, impossible. So I made use of hire scooters when they were available, or avoided outings that were beyond my ability. And despite the fact I have had mobility parking privileges since my diagnosis, to most people, my disability was invisible.  Not ‘looking’ sick or fitting the ‘disabled’ stereotype meant a difficult shift in my experience of society. Every frustrating interaction with people about what was wrong with me was a grating abrasion of misunderstanding that would slowly scab over, only to be picked at again and exposed, over and over.  A kind of circular torment for my mind.

The programme I am currently involved in is all about leadership for social change.  So of course, I’ve been thinking about social change. It is very dear to my heart.  How much I would love to wave a wizard’s staff and make all of the world a kinder place!  In the absence of that (where’s Gandalf when you need him?) I’ve been cogitating over language, and how it can have a profound effect on understanding. But also about how a conversation between the society at large and people who are considered disabled seems a lofty kind of starting point.

Like any conversation without a common vernacular, misunderstandings occur.  In just one example, our classic Disability Symbol shows a person in a wheelchair on a blue background. It’s globally recognised. It is by nature simplistic, because it is a symbol, a representation.  Short-hand to describe a designated access point for people who have difficulty being mobile. But somehow, the symbol has pervaded our collective concept of what being ‘disabled’ actually means. A dis -ability to walk.  Maybe, the symbol was just born from a notion of disability that is steeped in stereotype. I don’t know if there is a better way to symbolise disability in a pictograph. It is what we have and it serves it’s purpose.  But does it also serve our thinking?  Can it help us to reignite a discussion and develop a shared understanding?

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For a very long time, I struggled to accept that I too, was a legitimate member of the disability sector.  I felt I had to explain myself; should I get a bumper sticker to defend my use of my own mobility card? I felt this most keenly in the company of people who were disabled in the literal meaning of that symbol. People in wheelchairs and those who champion their rights.  As though my own limited mobility was in direct competition with their more evident disability. And so whilst I felt completely forgotten by the world of the able-bodied ‘well’, I felt unable to sit comfortably in my new designation. Invisibly disabled. A position that required my own elevator pitch of explanation, to anyone who cared (and even those who didn’t) that not all disability is visible.  It saddens me that some people within the disability sector find this hard to get to grips with.  How can we work together as a community if our diverse types of disability are not recognised by each other?

Recently, I posted on my blog’s Facebook page about the new working party that has been set up to provide more comprehensive and comprehensible data on the disabled community.  It’s a move I welcome. I have often tried to research local data related to people with disability.  There is not enough. The right questions are not being asked. We represent 24% of the population, and yet so little is known of who is in this sector.   What I can tell you, is that:
“The most common cause of disability for adults was disease or illness (42 percent)”.
You can find more general information in the statistical summary, here.
It’s interesting, that statistic.  I suspected, when I began to research for this piece that most people, when asked their definition of disability, may not even include sick people. Tell me, do you think that illness and disability are distinct from one another? There are hotly debated positions about what it all means. But does the definition matter as much as we think it does?

Or are we just a little bit precious about it?

As my friend Carly put it : “disability has different meanings to people with disability and without. For people without, it means impaired, lesser, poor them, other, pitiful, a loss of life, inspiration porn. But for people with disabilities, there’s a sense of pride, community, achievement, normalcy”.  Carly is an appearance diversity activist. Her work spans all manner of societal attitudes toward people with a variety of disabilities. Her blog is well worth a look.  Her comment got me thinking about our views of disability.  And all the rhetoric within the sector. I thought that when it all comes down to it, I just want to find the bridge that connects the diverse worlds within the disability sector to the world of  non-disabled people, to increase understanding and connection.

And because words are my go-to method for making sense of life, for me it begins here. Within the language.

I looked up definitions of disability. There were many, very wordy, carefully considered descriptions. I thought about how bogged down we get in all that verbosity.  And then I thought I should ask children; I canvassed the mums in my wider networks on facebook.  The mainstreaming of education for children with special needs has had a profound impact on the curriculum and the views of the present generation of school aged children. Where most of the pre-school children I asked had a narrower definition, like Ben; “their foots don’t work” or Asha “they ride little cars”.  School aged children generally talked about the ability factor: “not being able to do things as easily as we can” (Carter), and “(disabled people) have got a little problem that makes them a bit different” (Xavier)… and this, from Natasha, “it’s not something wrong with you, it’s like you have a gift to see things differently, and you may look different but really you’re not”.

And I wonder if I’ve been tying myself up in knots over all the layers of meaning, the symbology, the realities of an incredibly diverse society. We are not the only group skirting the statistical soup of New Zealand society. We represent, together, a good number of New Zealanders, but we are as diverse within our own sector as they are without. I suspect, social change that moves us away from the ‘othering’ begins when we stop considering ourselves as so different. When our own obsessions about our sector, our precious, carefully built ring fences break open for a new view. So, 24% of New Zealanders are disabled in some way. Not the same way, but in some way.  New and better statistical data might help us to meet the needs within our sector better.  It might inform more discussion, debate and dilemma.  It may help us better define our strongest identifying characteristics.

But it occurs to me, that social change can only happen when all of us can see that diversity itself is what have in common.  All of us, abled, disabled, invisibly or visibly, othered or outered, mainstream or fringe.

Diversity really is the one ring that binds us all.

 

To Be.

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Toward the end of last year, just as my sorry self was beginning to think I was running out of anything important enough to offer the world, I received an email that heralded a big change.  It was from Kylie at the Be.Accessible organisation.  I’ve written about them before, here.  They do excellent work in New Zealand: working onsite to improve accessibility across the country, increasing employment prospects for graduates with accessibility issues, championing the thinking about accessibility and community with the big thinkers of the private sector and developing leaders for social change.

I had written a piece about my birthday shopping expedition.  It was an accessibility nightmare.  You might have seen that piece, it was called Gone Girl.  Well, Kylie read it and emailed me, inviting me to a meeting to discuss ‘synergies’.  I thought that maybe she wanted to talk to me about my writing, so I went prepared.  I took a copy of my stats from the blog and had prepared to answer questions of the commercial kind.  But Kylie and her colleague Iris, wanted to know about my philosophy.  My core beliefs.  My illness journey and why I write; they asked if I knew what my audience was and for the first time I had an objective measure of what those stats meant.  It was a turning point for me. Kylie asked if I had thought much about the future of my blog and the directions my writing might take. And she outlined the Be.Leadership program.  They invited me to apply.

I came home fizzing. My whole body was shaking with the effort of the meeting, the nervousness I had felt and then the excitement as a whole new possibility opened up for me.  It’s one of the things I have learned to love about having a life that has swerved so far from my original plans. It keeps surprising me!  I applied, and then, on Christmas Eve I received the message I had been hoping for.  I had been accepted into the program.  Every year, 20 people from the disability community are selected to undertake a year of inquiry, reflection and growth in the field of social leadership. We’ll be engaging with leaders from a range of industries and sectors.  We’ll be workshopping, discussing, thinking and growing as leaders ourselves.

One of the things I thought had passed me by when I got ill, was the opportunity to do further study.  I just didn’t know how I would manage to physically do all the things required to even begin.  How I would be able to manage a fixed schedule with an unpredictable illness?   But life seems to be smiling my way.  I will be studying, after all.  I’ll be studying with an organisation who are committed to accessibility, they are perfectly positioned to understand diversity. So it will be possible for me to make the accommodations I need, to do what I need to do. And I will be studying something I am passionate about:  how to help make our society one “where everyone can just BE.” (Minnie Baragwanath).  I’ll be representing the unique perspective of people suffering with invisible illness and disabilities.  I’ll be writing.  And if I continue to feel as I do now on pulse steroid therapy, I’ll be able to do it with so much more energy.

After years of pushing against a tide of impossibility, my own sea of troubles, there’s a ship on my horizon. Once upon a time Shakespeare penned the timeless question; “To be or not to be?”.   I smile, as I write the following words: ‘to Be.’ is my answer.  To be all that I can be.  The programme starts in March, I am gathering together my reading list and filling my head with all manner of anticipations! But before I get all carried away with it, I want to say thank you; because in all truth, this pathway has opened up for me because of this blog… and that wouldn’t exist without my readers. That’s YOU!  I have found that writing about the things that matter gives me purpose, knowing you care about these things too gives me hope.  Thank you for giving my words the chance to enter your space. Thank you for reading and encouraging and helping me through all of the difficulties.  Thank you for sharing with me a passion for growing a compassionate, understanding community for people with invisible illness and disability. Now, it’s time for us to celebrate something great.  The start of an exciting new learning journey.  I can’t wait to share it with you!

I’m off to Be.Leadership!

teddyrooseveltP.S The above quote was mentioned by Bear Grylls in his show, The Island, on the telly last night.  He was talking about great leadership.  It stuck with me because I think it is a vital part of leadership. How important it is to show people you care before you can hope to lead them.  It is my desire to be that kind of leader. I’ll be thinking about that while I prepare for my first ‘Be.Leadership’ task.  Watch this space!

To be or not to be?

Kia Kaha. Stand Tall.

Today is International Day of People with Disability.

It’s a day for celebrating difference, for acknowledging ability.  It’s a day for shouting out achievements from the rooftops.  What a brilliant group of people live in the category of ‘People with Disability’.  As I get to know more people in this new community of mine, I am staggered.  I wonder if you are aware too?  When was the last time you interacted with someone of differing ability?  Did you feel strange? Did you wonder about who they are?  Did you get beyond the difference to see the similarities?

I was walking through a group of parents at my son’s school the other morning.  I have only been walking with a cane this year, apart from it, my disability is largely invisible.  I have a neurological disorder that makes it difficult for me to stand for long.  Getting around is increasingly more challenging. I use the cane for balance and it’s built in seat as somewhere to perch when the dizziness overwhelms.

“MAKE WAY FOR THE DISABLED LADY!”   my son yells out, like a town crier.  I cringe.  I don’t like to be looked at, at the best of times.  I felt at once awkward and neon lit.
“Zed!” I admonished.
“What?!”  He looks at me, his eyes wide.  He grins.  
“But you ARE, Mum! I’m just getting them up to speed”.

I look at his face and think about how simple it all is when you are seven. How simple it really should stay.  I think about how adulthood and social stigma and self-consciousness and the media and social norms all teach us about what
“disability” is.

It’s time for a different conversation.  It’s time for me to join my son in getting people up to speed.  I spent last Saturday night at a function for the Be.Accessible Movement It’s the first function I have been to where I felt able to sit when I needed to, able to be real about how I was feeling without it dampening the mood in the slightest. There was room in that function hall for difference.  No questioning looks, no awkwardness.  I was not ‘other’ but, ‘another’. There were genuinely fantastic people to meet, fast connections; no barriers.  It was a revelation to me.  I wish that all of society could function this way.  And I believe it can.

If I can make a difference to you, if you can make a difference to someone else.  If making a difference is simply in noticing the sameness within difference, we’re on our way.

This beautiful verse crossed my path yesterday.  Perfect timing for this International Day of People with Disability.  (FYI:  the Kahikatea is a wide branching New Zealand native tree).

By Henry Melburn

E tu kahikatea
E whakapai ururoa
Awhi mai awhi atu
Tatou tatou e, tatou tatou e

Stand tall like the kahikatea
To brave the changes
Embrace one another
We are one together

Not vain the weakest, if their force(1)

I made this facebook cover this morning (feel free to use it for your facebook today).  I thought Homer’s words express what I am trying to say.  There may be differences in the ability of the “disabled”  that people consider to be weakness.   But there are strengths beyond belief. There is value and diversity and an untapped resource of brilliance in this community.  We need to start seeing all diverse groups within our society as part of the whole.  Let’s unite en force:

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Celebrating difference and acknowledging ability and making it possible for everyone to just, be.