Saturday, 7 July 2018

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

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

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

And the internet exploded.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Michelle

Friday, 8 June 2018

Finding a Moment

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


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

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

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

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

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

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

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

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

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

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

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

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


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

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


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

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




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

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



Michelle

Friday, 6 April 2018

Review: Sigvaris Doff n Donner.


[Image: Photo of the Sigvaris Doff n Donner. 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 source.]

This is not a sponsored post. I purchased my Sigvaris Doff n Donner from my local Access Rehabilitation Equipment store last year. They can be purchased directly from Sigvaris stores and online from most of the larger compression stocking retailers.

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 Sigvaris 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. 

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.




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.

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 Mr Bean 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.

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 Mr Bean skit in the making as I move in unison with the stockings thus falling off the bed or lounge.

I spotted the Sigvaris Doff n Donner in an advertisement last year and was intrigued by the design and apparent ease of use. My local rehabilitation store ordered in the Doff n Donner 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 Doff n Donner 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.

Product:

The Sigvaris Doff n Donner comes in two parts that can be purchased separately: A cone and the Doff n Donner (DND) itself.

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.

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.

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" (Source)

Trial:

I tried the product in the store with the help and instruction of the assistant, again with a Sigvaris rep who came to the rehabilitation store and here at home now for approximately 6 months.

Results:
In Sigvaris 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.

Technique is everything with this product and will make or break its usefulness. There are a number of videos from both Sigvaris 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.

There is simply no way that the stockings I use can be easily lifted over the DND 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 Sigvaris 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.



[Video: this instructional video from Sigvaris demonstrates how to use the Doff n Donner for both knee-high and thigh-high compression stockings.]

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.

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.

Donning the stocking

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.

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. 

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.

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.

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.

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.

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.

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. 

Removing your stocking:

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.

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.

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.

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.



[Video: short video of Michelle sitting at her kitchen table removing her stockings with the Doff n Donner. She wears a green and black dress and her stockings are black and white batik compression stockings from Juzo. She removes the stocking quickly and with little effort. At the end of the video, she jiggles the stocking and Doff n Donner to separate the two.]


Verdict:

The Sigvaris Doff n Donner is unlike any other donning products on the market and the unique design has many pluses.

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.

But it also has problems.

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.

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.

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.

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.

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.

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.


Personally, I want products that increase my independence.  


The Sigvaris Doff n Donner partially meets this brief. 


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.



[Video: a short demonstration video from Sigvaris using the DND portion of the device on an arm (no cone) to roll up a compression stocking.]

Would I buy the product again?


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.

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 Sigvaris 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.

Have you used the Sigvaris Doff n Donner? I'd love to hear feedback from others.

Michelle

Sarah Vaughan's version of Shiny Stockings feels like the right musical accompaniment.

Thursday, 29 March 2018

A day in the life.

[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.]



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.

* * *

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.

* * * 


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.

* * *

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*

* * *

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.

* * *

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.

* * *


Sitting quietly near a photo of myself and Mr Grumpy, a blurb about my disability experience underneath. It's crowded and noisy. The coffee, International Roast 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.

* * *

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.

* * * 

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.

* * *

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 American Idol. 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.



I love this song by Sara Watkins. It always feels restful and joyous.

Friday, 23 February 2018

Vintage #upanddressed

[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.]



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.

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.

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.



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 Guermantes Vintage wishing for a Tattslotto 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. 

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.

A few weeks ago a package arrived. 

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 Instagram.

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.

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.

Freyja and the chickens were suitably impressed.


[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.]

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.


[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.]

All in all, it was glorious.


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.

I am over waiting.

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.

I am tired of waiting.


So I’ll wear beautiful vintage pieces. I’ll take photos and pretend that I will one day own a complete Miss Fisher wardrobe.

I’ll embrace the beauty of the pieces I am lucky enough to own. 

And I’ll be grateful for thoughtful friends and whoever sat and made this dress with care all those years ago.

Michelle

Huge thanks to the lovely Carly Findlay 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.

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 Sigvaris compression stockings.



It's hard to believe that Judy Garland was only 14 when she recorded It's Love I'm After in 1936.

Friday, 29 December 2017

Break

[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"]



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.

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.

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 Netflix or Plex, 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 Mor's Mashmellow hand cream.

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.

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.

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 knowing that a bit more or a bit less is needed.

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.

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.

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.

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.

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.

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.

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.

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.

My break is quiet and perfect.

And much needed.

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.

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.

Today's that's pumpkin and a shower. Netflix and sleep.

And listening to the rain as the last of the light fades from the sky.

Tomorrow?

Well, that's a world of possibilities I am yet to discover. I'll just go with the flow.

Michelle

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.

Wednesday, 22 November 2017

Heat

[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.]



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.

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.

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.

The heat is here and my world shrinks.

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.

Heat intolerance is isolation. 


It is claustrophobic. 

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.

Heat

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.

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 Hydralyte 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.

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.

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.

I feel the weight in my bones and my heart. My sluggish mind plods along unable to find solutions.

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.

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.

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.

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.

Michelle


Friday, 6 October 2017

It's not just a step


[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. (source)]



I enjoy going out to eat, even if it's one chip and a couple of Ondans. I like going for a glass of wine, sitting and chatting, mostly at Mr Grumpy as he sits and nods and uh huhs, in all the right places.

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.

It's just a step.

I should have rung ahead. I should have checked. Again. Again. Again.

There's a portable ramp.

Just ask.

Not that there are any signs to let you know it exists.

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.

Everyone is overly solicitous and the crowd of onlookers gawk as the spectacle unfolds.

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?

There's applause. Or "a good on you" "well done."

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.

It's not just a step.



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.

It's not just a step.



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.

It's not just a step.




The clothing store has a ramp, but a door I can't open. Someone comes frantically running. Overly solicitous. Sing song voice.

I'm in but can't manoeuvre through the racks or tables thanks to displays that spill over at ground level.

They have a friend, neighbour, second cousin twice removed who is disabled. Do I know them?

It's so good I get out.

So what's wrong with you?

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.

It's not just a step.




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 Play School and pats me as I try to just look at the products.

It's not just a step.



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.

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.

I roll out once more to pay at the desk I can't see over.

It's not just a step.




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.

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.

It's not just a step.




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.

It's not just a step.




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.

It's not just the inability to see me as a singular independent woman.

Or the rude and invasive questions.

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.




Another accessible parking fiasco reigns across Facebook.
Another advocate receiving death threats.
Another person is unable to access public transport.
Another forced to prove their disability.
Another can't access their place of employment.
Another misses out on tickets due to a cumbersome accessible ticketing procedures.
Another writing residency that's not accessible.
Another meme about lists marginalised groups that forgets disability exists.
Another advocacy event that is inaccessible.
Another dies because doctors couldn't see beyond their disability.
Another dies at the hands of police.
Another is murdered in a mercy killing.
Another refusal to conduct a Royal Commission into institutional abuse.
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.
Another story where segregation and subjugation are marketed as inclusive.
Another where people are employed for a pittance while the able-bodied organisers collect their regular pay checks and sit around and pat themselves on the back.
Another stat on homelessness and the ridiculous lack of accessible accommodation both in public and private housing.
Another story indicating we are better off dead than disabled.
Another inspirational school quarterback takes disabled girl to prom, story.
Another demand that disabled people put in the emotional labour to explain.
Another able-bodied journalist, commentator, troll, deciding how we should feel, act, live, or die.
Another saying overtly and more subtly that we could not possibly be the experts on our lives or our needs and wants.
Another.

Another in the long lists of anothers.




Another built on top of all the others before it. Weighing us down. Exhausting us. Until we either lash out or give in.

Because it's not just a step.




It is all the steps 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.

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.

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.

It's that when I speak out I am chastised. Be quiet little disabled person. You are making me uncomfortable. 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.




It's that I list off all the reasons we have to be upset and angry, (Disability erasure at it's finest), I get lots of head nodding and agreement. Outrage that bursts forth, then dwindles, is forgotten, and nothing changes.




It's not just a step.




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.

It's not just a step and I am tired.



Michelle