Thursday, 2 August 2018

Show and tell

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



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

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

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

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


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

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

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

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


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

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

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

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

Glasses help us see.

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



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

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



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


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

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

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

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

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

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

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

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

We ARE 



and


There is 


and 

We are unapologetically visible. 

and we have


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

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

Michelle

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

8 comments:

  1. You're amazing Michelle and you look so glamorous! I'm always hiding my unwashed hair under hats when I do get out. I love your red powerchair - I have a rollator that colour and my manual wheelchair is blue. Your blog really brings a smile to my face on the darkest days. Hugs from the UK xxx

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    1. I've had a close personal love affair with dry shampoo this past year. Washing my hair so exhausting and I can't really do it properly anymore, but at least that dry shampoo stuff takes the worst of the oil and mank out. I'm not a huge hat person so I tend to put my hair up when it's really bad or I have at times gone into my hairdresser just for a wash. I'm glad I can help make you smile we all need something that can pick us up on those dark days xx

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  2. Hi Michele

    I really enjoy reading your posts. I also look regularly at your instagram too. I love that you dress up so beautifully. I know it has its costs physically, but the benefits are awesome. You look fab. I’m endeavouring to dress most days. It’s a struggle to get out of my pjs. I’ve got POTS, overactive mast cells, and one month ago was diagnosed with Graves’ disease but have had to stop treatment for it as the medication has inflamed my liver. Sleepless nights are a part of Graves’ disease and I am completely sleep deprived. As a consequence of sleep deprivation my memory is shot and my conversation is mostly word salad. I’m trying to get to the point here....Anyway, does dressing up and attending your medical appointments help you to be taken seriously by doctors? I’m 62 and I find most doctors just don’t take me seriously. If I’m contained and looking in control they respond as if I’m not sick/in pain. If I’m emotional then I’m treated as though I’m over reacting etc...and hence, not sick/in pain. I’ve decided to try dressing up generally and also when going to the doctors because I need to be treated respectfully, in the surgery and in life, and I hope this will help.

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    1. It's a real catch 22. I find I dress for myself and how it makes me feel rather than anyone else but I have cultivated a small group of doctors who get me and understand that a nice dress and lippy doesn't negate my illness or pain. But it's been tough going to find them and I still encounter crappy doctors who either do the disbelief or hysterical female lines you describe. I have learnt to stand up for myself and be assertive over the years, plus my husband is a great advocate and can explain things I can't (not that it should take him confirming what I describe to my doctors for them to believe me). Medicine struggles to work with those who don't meet their expectations of illness. I do hope you can find a doctor who treats you with the respect you deserve. (and sorry for the huge delay in responding I have been away from the blog for months and only now wading back through comments)

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  3. Hello

    Just check in to see how your dysautonomia world is going. Living with dysautonomia for 15 years has so many different seasons.

    So even when you are not posting and taking a break from your blog., I am thinking of you. Hoping that things are going well- even stable. 15 years of this teaches me to reach out encourage others- because it is a hard battle on the symptomatic days- ecstatic happiness on the functional days. Eventually you weather through so many days, so many battles.
    - just seeing the blue sky in the morning, having a dog at your feet just some how just keeps you waiting and hoping to feel contentment serenity and dysautonomia no matter the day

    Late night blogging when sleep is impossible


    Hope you are doing good- from a big fan in Canada


    Corrine

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    1. Thanks Corrine. I feel like such a slack blogger but Summer and life have sucked so I have been concentrating on survival and focusing on my body's needs and finding the joy in life. I really appreciate you checking in. As you say after all this time you know how this Dysautonomia malarky goes and it's nice to have someone check in to see how you're going. Thank You. Michelle

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  4. A friend sent me a link to this because I feel so strange about buying a cane. (Mine is black with a bunch of different colored dots on it, and it folds up for when I don't need it, and even though I think it's quite pretty I'm kind of anxious about using it.) Thanks for writing--I can't really hide my disability with or without a cane, so I'm trying, and not really always succeeding, to make it fashion. I love your lucite cane--where did you get it?

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    1. I used to feel that anxiety too but over time and with the support of friends in the disability and illness community and my family I learnt to love my aides and the freedom they provide me. Give yourself time to adjust and know that you're doing what's right for you. The walking stick was a gift from a brand in the UK https://www.neo-walk.com/ they have some fabulous options.

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx