So this is what broken feels like, I think as I slump against an all too familiar wall of inequity dividing the labyrinth of my life. The blue sky is ever watchful above me. I glance at it hopefully. A tiny, distrustful part of me is afraid it won’t be there, even though it’s been over a year since that fateful afternoon when it first appeared literally out of nowhere. It surprises and delights me with its audaciousness. I still remember climbing on the outdoor table to reach it. It’s the same table I sit at now, wondering if I will find the strength and stomach to get back up this time, and continue onward, the way I’ve done so many times before.
The problem is, this feels different. This doesn’t feel like the exhaustion between battle rounds. This feels like a shedding of something I’m yet to put my finger on. And if I weren’t quite so shamed, shattered and splattered, like a soothsayer’s set of animal entrails on the side of the road, it could be quite liberating. But I’m too tired to bask in the potential significance of what this might mean. All I feel is the brokenness of my being, after too many bruises, bumps and thumps against the emotion of endless exclusion, painfully grating against my idealism.
The constant invalidation of my existence through attitudinal and environmental factors has decreased me to this state of dejectedness, where I’m not sure I can keep painting and repainting the carnival like facade of inclusion with all its bright colours, garish faces and termite infested wooden scaffolding, precariously holding itself up for the world to admire, and congratulate itself on the vibrancy of its accommodation. All the while, they secretly thank the God’s above that it’s not they who are behind those pleading eyes, looking longingly out from those flattened placards and places of exclusion, inequity and isolation.
I want it to be different, I wish it to be different, I will it to be different, I work at it to be different, yet it’s still the same. I feel second class and segregated. Snobbery smacks me in the face time and again until my cheeks are numb with the familiarity of the once painful sensation. I sit quietly, a cup of tea in one hand, and my past decisions heavily weighted in the other, as I detachedly observe the elephant casually emerging in my periphery. What now? it seems to ask. What’s next? I do not have an answer, but nor do I need one. It could be offering me the twinkling, sprinkling stars of my deepest desires and longest held ambitions, and I wouldn’t have the energy, grace or fierce rebellion to accept, because I am done!
Now there is a silence I barely register, where once my nerves would alternately jangle and fray with anticipation and agony of the injustice of inequity verses the possibility of equality. My worry no longer gnaws at my consciousness like a rabbit at a carrot, because the carrot is gone. All I note is nothing, not even an emptiness asking to be filled with its usual cup of ambivalence. I have become an old, dry, discoloured corn husk, discarded in a field of unremarkability, invalidation, inequity, and couldn’t care less.
The Song Remains The Same
It’s the middle of winter, and the sky is a deep, icy blue. It contrasts joyously with the tall, white walls of our house. I know this is where I’ll find myself for the coming weeks, playing cat and mouse with the shadows of the trees, and obediently following the sunshine like a daffodil around the courtyard.
I wait for the traditional guilt to set in, but it doesn’t come. For once, this is not about my incessant measurements and comparisons between where I have been, or might one day be. I pair my continual failure, ineptness and self-criticism with increments of the Roman calendar, be it the mystical, silver beauty of a heavily pregnant moon, the autumnal display of delicious, honey coloured, plump hot cross buns in the bakery window, the incessant grey dampness of the current season, the ever increasing number of candles crowding my chocolate birthday cake, the sweet scent of the light, white Jasmine in early spring, or the sheer audacity of the bright red Christmas bush to tempestuously bloom at all.
I can’t seem to muster the familiar feelings of anger, indignity and frustration that I haven’t broken above the national poverty line, and we are forever to be stuck in this perpetual cycle of barely getting by. I can’t wrap it in a pretty bow of rose coloured optimism that says next week, next month or next year, things will be different. Because for once, I don’t think I care either way. When all is said and done, a big country kitchen with a real butcher’s block and shelves full of copper bowls, isn’t going to make the star shaped cookies my daughter and I made on Wednesday afternoon any more delicious
So why continue to worry about not having such a glorious space to cook? The fact is, we eat extraordinarily well on the shoestring I provide, and that wouldn’t change regardless of how soft our furnishings or prestigious our address. We would still use the left over lamb bones to make a pasta sauce, roll our own pizza dough, make pastry, balance a curry with coriander, experiment with homemade condiments, see how far we could stretch a kilo of mince, pop popcorn without a lid, and look up recipes on YouTube.
I would still insist on the sand pit, the swing, and all the other child-friendly paraphernalia strewn across our garden just as they are. My favourite throw rug would be just as cosy, my desk just as chaotic, and my beloved treadmill just as valued. My relationship with my husband would be just as lovely and my friends just as gloriously motley as ever. I would still listen to audio books on the train, curse my adaptive technology when it failed, complain about inaccessible websites, wonder what colour to dye my hair next, chase the perfect cup of coffee, swear to God I have nothing to wear, forget to ask for help when I need it, lust after destination trail runs, and relish the quietness of putting our little girl to bed.
The Many Faces Of Inequity
Having a fancy corporate title and company laptop isn’t going to make me anything other than a glorified advocate for accessibility no matter how people want to dress it up and pretend otherwise. Because regardless of my job description or tax bracket, even if it has nothing to do with me, I will always be implicitly expected to be the poster girl for diversity in an organisation drowning in inequity. So why try to prove my worth by climbing a ladder to nowhere? Why battle through yet another market ready qualification to illustrate my knowledge? All I’ll be met with is the same wall of inequity, only in a slightly different cladding than what I’m currently slumped against.
The beautiful irony being, as a person who is blind, I am naturally geared toward higher-level thinking, and joining the dots in different ways, as I do not have the luxury of visual distraction to entertain me. My life is made up of strategy, logistics, mental maps, data extrapolation, and finding patterns and links between seemingly unrelated narratives and information in order to make sense of a world that quite naturally and rightly prides itself on visuality. And as a standalone, this renders me perfectly suited to that illusive, fancy corporate title or leadership position.
Too bad I am unable to read print, no matter the magnification, and am completely dependent on various adaptive technologies and mobility aids to compete in a world which largely considers disability as the responsibility of the impaired, rather than a social construct. Otherwise, I might have a better shot at succeeding with my butterfly type approach, where large-scale social transformation can happen, rather than continually be relegated to the ticks inside boxes and faces of tokens.
Instead, I get to confidently, if not proudly claim to be a part of the majority who are not employed to their fullest capacity. One glance at my scantily clothed resume, with all its naked vulnerability and blemishes on show, reflects this fact. There are gaps in my employment history where I was unable to find work. There are strings of menial jobs, which are haphazard and sporadic, but they were all I could get. I have qualifications I have hardly used, in a bid to legitimise my skills and make myself more employable. I have diligently worked through millions of professional development short courses to illustrate my capabilities, most of which I don’t even bother including anymore, because I can’t see the point. There are volunteer positions I’ve taken in an attempt to gain experience or exposure. Finally, like many people with disability, I have resorted to employing myself as a way of earning an income and contributing to society, but with very limited results.
However, what my paperwork does not show is the times I’ve been discriminated against, blatant or otherwise. I’ve been blamed for the perceived extra work I create, where if inclusive design principles had been adhered to in the first place, my disability would not have come into the equation. I’ve been judged, passed over for a project, promotion or even an interview because of how a job has been structured, or a decision maker views my potential based on their imaginings and/or discomfort of disability. Nor does it show the compromises, limitations, awkwardness and sometimes impossibilities that are a by-product of working with adaptive technology and often reverse engineered accommodations. Lastly, it does not highlight how I have been exploited, strung along, strung up, strung out, taken advantage of, manipulated, or pigeonholed, and how I’ve been offered coffee in exchange for a professional opinion, service or resource, that if I were not a person with a disability, would be happily purchased, paid for and promoted.
Climbing Up The Ivory Stairs
The plain truth is, I have never been able to pull it together the way I would want, the way of my imagination, my true capability, or the way I would have if I could see. People mistakenly assume that because I have a congenital disability I am unaware of the potential of what my life would be without it. After all, my sight loss is not the result of a terrible accident, medical negligence, or a genetic mishap that dared to reveal itself outside of the womb. Therefore, how would I know, let alone want for anything more?
I try to make the best of it, but like a fish out of water, I feel suffocated by the world of ableism, inequity, and insisted disability charity, which although we like to think is more of a social model, its impossible ideology still forces me to live within the iron lung of imposed advocacy. What I really want is to be free of this inequitable glasshouse lined with false optimism and flimsy silver thread, because no amount of smiling beatifically at the situation is going to change it. Reviewing one’s mindset only gets a girl so far. It certainly doesn’t make me eligible for a driver’s license, magically provide a cure for my broken eyes, or any number of miraculous, able yardsticks I or others use to compare me against.
However, for now this is less about my employment aspirations, although admittedly those too have snapped my spirit in half, creating brittle, jagged edges, like sharp, sticky shards of toffee across my inner realm, causing my thoughts to catch, my breath to stop, and my words to snag in my throat if I try to articulate them. This is more about equity in the arts, sports and social arenas. For example, having audio description and Auslan provisions for a theatre production as a matter of course, an actual policy in place for me to have more than one guide runner across an athletic season, the ability to alt text an image on Instagram, or some consistent braille signage outside the toilets in a shopping centre.
Advocacy in and of itself is exhausting, because advocacy, unlike education, is an unequal possession of guilt on the minority to prove its worth and validity to a hierarchy of ignorance, arrogance and opportunism. In other words, it is a fancy title for arguing with people who are unwilling or unable to see past their sameness, to the value and contribution of my difference.
I am sick of playing chameleon, ever trying to match the plushness of credibility, velvety touch of relevance, and haughtiness of respectability, when clearly I am not cut from the same cloth. The fact is, we are generations away from any real change, and even then, there is no guarantee. After all, humans don’t have a tradition of treating difference, let alone disability, with any real respect. It is either a princess or pauper mentality, neither of which are realistic or relished by those beholden with the burden of being seen as less than.
The feelings and constant reminders of otherness are the hardest to deal with, when all I really want is to belong. I long for an identity whereby my disability does not influence the entirety of my being. Of course, I know this is impossible, as my disability is as much a part of me as is my humanity. I can no more escape my blindness than I can escape the fragrance of freshly cut grass, the blustery wind on a cliff’s edge, the sound of waves as they kiss the seashore, or the beating of my own heart. And nor do I want to, accept when I do, and right now, I do. I desperately, achingly, pleadingly, terribly want to not have this affliction pin-pricking every fibre of my being. Because oh how different my life would look without it. How much fairer, easier and effortless it all seems from within the glossy confines of my imaginings and stories from my friends.
People assume I don’t know equity. But I do know equity. What I don’t know is the comfort and privilege that comes with not having to ask for it in the first place.