You’ve got to be kidding, I say to my husband, my voice drenched with resentment. How is any of this fair, I wonder as I struggle to gain control of my emotions. He’s just finished telling me how he completed his entire undergraduate degree without independently looking up a single academic database for supplementary materials whatsoever.
I’ve recently begun my PhD. I’m sitting on the lounge scrolling through academic articles on my phone when he comes into the room utterly miffed by the discovery that academic information has to be bought like a hand of bananas or loaf of bread. He always thought it was freely available, and is curious as to how the system works. I explain it according to my very limited understanding, but am distracted by something immediately unravelling in my mind, and unbeknownst to him, I cannot possibly have this discussion right now. I’m too busy reeling back in horror at the fundamental shifting of my universe.
We met a little over ten years earlier on day one, class one of my undergraduate arts degree. Like many of my cohort, completing a degree online was not only the most practical option, but the most affordable. It allowed me to keep my full time job courtesy of a flexible logon, and the learn and leave a comment twenty-four hour format. It provided me the luxury of avoiding unnecessary and sometimes unreliable travel options, having to navigate a campus full of confusing corridors and shifting classrooms, find a new seat in every lecture or tutorial, and sit through stupid questions that had already been answered if only people listened. Not to mention somehow deal directly with other people, finding amenities, eating in public, and all other manner of mundanities. After all this, I’d still have to find the cognition and energy to get home again.
The online medium provided an ongoing supply of chocolate that didn’t involve an inaccessible vending machine. It allowed me to keep to myself behind a keyboard and not navigate the built environment or deal with social contracts. It was perfect. All I wanted to do was work through my required subjects as quickly as possible, gain an undergraduate degree, find a better job and maybe buy a house.
Unlike many of my peers, I didn’t opt for a university education straight from school, even though I secretly wanted to find my place in an academic context. Instead, I waited almost fifteen years until access to information became more readily available to people such as myself who rely on text to speech technology to do the most basic of tasks. Personally, the rooms full of braille volumes of the early to mid 90’s were no longer worth it or as feasible as they had been throughout my high school days.
High school was mandatory, and it hadn’t gone well. If my marks were too high, I was accused of cheating. If they were too low, I was accused of deliberately not doing enough. If I broke the blindness mould, put forth an idea, excelled or failed in areas I shouldn’t have, I was labelled a troublemaker. If I claimed an interest in a subject considered off limits to a blind student by teaching staff, it was taken out of my hands and replaced with something far more suitable, such as musical appreciation instead of my preferred option of geography.
I was an issue, and nobody bothered to hide their disdain. Sure, there was the odd supportive adult, but they were few and far between. Most people were too busy punishing me for the inconvenience I caused as a disabled student rather than considering the systems and structures in place that were the actual cause of their irritation. After all, if the protocol was good enough for everyone else, why wasn’t it good enough for me? Surely I must be at fault, and only if I tried harder to fit in would everything be fine.
Making friends had been difficult. I was different, and kids, particularly teenagers, don’t do difference well. Especially disability, seen as defective difference. I was tolerated, but if anyone ever wanted to distance themselves from my pariahdom, all they had to do was move their regular place in the playground, and I wouldn’t be able to find them. That would be the signal that I was no longer a novelty. My capital or exploitative ability had run its course.
I told myself that university was far too important to risk racing into and possibly failing due to the exclusive ableist infrastructure and attitudes firmly in place. However, the deeper truth was, while I envied my blind friends their undergraduate antics, I didn’t have enough positive educational experiences in the bank to draw upon, let alone the self-belief to provide compensation for the mountains of extra work to reward ratio. Therefore, I would wait, and eventually one far away day I would find the means to buy that luxury item of higher education I’d always wanted.
Not only had the accessibility of the internet now caught up to my ambition, and I’d found an area of study I was genuinely excited about, but finally a way I could acquire my long coveted, snow globe of success existed. I pinned everything on this undergraduate degree, using it as a silver thread of possibility to shimmy into a better life.
As a child, one of the most influential books my mother read me was Helen Keller’s “Teacher”. I was spellbound by the idea of being able to read and write for oneself. Up until that point, I don’t think it had occurred to me that there was a different option to the large print, thick black textas and pastel coloured cardboard offered by my primary school, which I could never quite properly grasp with my failing eyesight.
I knew I was different. That was evident from the get-go, courtesy of the stage whispered conversations of my teachers, social workers, administrators and other adults that presumably I wasn’t supposed to notice or understand the meaning. I was all too aware of their awkward placement of me in a classroom, their admonishments when I couldn’t complete my work due to the almost exclusive reliance on visuals, or just how problematic I was in general. I couldn’t yet articulate my disabledness, so instead I internalised their constant blaming and shaming of my disability and subsequent incapacity to fit into an education system clearly unable to cope with otherness, and have carried it through ever since.
I was part of the first generation of children who were blind or had low vision to be mainstream educated as opposed to institutionalised, so I guess they had to start somewhere. But the truth was, it was a system that simply wasn’t prepared, equipped or truly willing to deal with me.
Helen Keller’s account of being liberated through braille really got me thinking. If she could experience that kind of mind altering, soul soaring, life changing, door opening opportunity, then why couldn’t I have that same choice? Why were they trying to force me to read and write print, when clearly I wasn’t coping? From that moment onward, I spent hours alone on my bedroom floor running my fingers back and forth over the braille alphabet embossed on the back of the book jacket, desperate to understand. I knew braille would be my path to freedom, and all I had to do was wait for an adult to realise.
Through Helen Keller’s story, and her pioneering efforts, I discovered that education was the key to everything. All I needed to do was become educated, and anything would be possible, or so I thought. That’s why I always held an undergraduate degree in such high esteem, because surely that would be my stepping stone to something more.
I would have loved a law degree, enraptured by the idea of practicing. However, this probably has more to do with the fantasy lives portrayed in shows such as Perry Mason, Ally McBeal, The Practice, and Boston Legal, with their carefully scripted melodramatics, pointed arguments, double edged quips, high flying characters and the fashion I adored from childhood.
Every now and then, I would examine the course listings and curriculum, hoping the descriptions would dissolve into something more soft and pliable than the cement wall-like substance which beckoned me to bang my head. But each time it was the same. Regardless of how airy and buoyant my intentions, or how ready I felt, I would fall flat against the idea as it crumbled into salt under my scrutiny.
I was probably more in love with the capital and status I expected to accompany such a prestigious qualification. I planned to treat it like a designer handbag or Rolls Royce ornament. See? I am a Lawyer, I would say. So ha ha, I get to be here, and you can’t tell me no, because I’m smart, and I’m useful, and people respect me.
Unfortunately the explanations of legal definitions, tortes, and promises of presidents didn’t jump and play with me the way the words do in the classical texts of Rome and Greece, or the pages of Dostoyevsky, Balzac, Irving, or the Bronte sisters. That’s how I ended up majoring in literature and communication simultaneously, followed by a second undergraduate degree in history and politics.
I simply couldn’t go past the reading lists without my heart quickening in anticipation of their delicious secrets hidden inside. Who cared if an arts degree wasn’t useful, at least it would be fun, I answered when anybody asked. If I were going to commit to the three years it took to complete an undergraduate degree, then I’d enjoy it, and the rest would take care of itself.
I’d always known the inequities of my undergraduate experience were greater than those of my peers, but I hadn’t minded. Difficult is all part of the territory as a person with disability. And I found it very difficult. Difficult, as in sobbing into a bottle of wine at least once a subject. Sometimes twice or three times depending on the circumstance, which is quite a lot when completing two or often three subjects simultaneously.
I was often five or more weeks into a thirteen week term and still without the basic course readings to build from, yet still expected to finish my course work by the thirteen week mark regardless of the delays. Repeatedly I received course materials after a subject had finished and I’d moved on to the next. Sometimes I had to drop out of a subject all together because a university administrator forgot to process my request for alternative formatted materials. In spite of the difficulties, and thanks to a network of supportive lecturers, friends, service provisions, and my strong advocacy skills, I completed my undergraduate degrees with reasonable marks.
However, I hadn’t realised just how wide the inequity gap had actually been until this moment. I knew my husband’s undergraduate experience was different to my own. After all, I’d been there in some form for much of it, as we first exchanged emails, then phone numbers and eventual lover’s kisses. We conversed about course content, compared notes, passionately argued over interpretation, read each other’s work, suggested alternatives, and generally supported one another in our respective ways.
Like many of my university friends and course lecturers, he would send extra materials when he could, or edit my essay in an emergency, but I never properly explained to him just how I came across my information, probably because I thought it was how everybody did it. Sure, the course guides were handy, and God bless course readings, but didn’t everyone then login to the library and trawl through the only accessible academic database they could find among the plethora of options in search of juicy morsels of intellectual argument to bolster their theories? I mean, how else would I be able to compare ancient Egyptian funerary myth with contemporary Australian literature without such extensive research?
In fact, the research was what I loved most about my undergraduate studies. It was always interesting to me how the subjects I thought I would enjoy, based on some primitive preconceived notion, weren’t always the ones I got the most from in return. Often it was the subjects I was most afraid of or daunted by that gave up the most gold.
At the beginning of every subject, I knew there wasn’t a minute to waste, because who knows when my alternative formatted course materials would start to trickle in, let alone in what order? Firstly, I would contact my course tutor directly, explaining the specifics of my disability, the limits of my adaptive technology and the inequities of my study situation, asking for at least the first assignment question so I could get started. I always found self advocacy most effective in garnering understanding and flexibility. After all, we were in this together, and if I were honest and upfront about my constraints, it gave each of us an opportunity to come up with solutions and compromises.
Admittedly, the wait between that first email and their response could be tense, as my insecurities and the ghosts of teachers past taunted me like clouds blocking my sun. However, they were always unfounded, and I was met with nothing but loveliness and helpfulness from all my lecturers in return.
Secondly, I would login to my state library e-resources collection and begin to perform the most unsophisticated set of searches ever. It may not have been pretty or efficient, but at least it was proactive. I didn’t yet understand the and/or theory, let alone the parameter strings spoken in the secret language of librarians which would streamline my searches. It was a cumbersome undertaking, but I found it interesting to read how academics would argue a point. I would then read article after article, and if I came across one I thought interesting or useful, I would select all, copy the text across into a word document, doctor the pages upon pages of surplus details such as return to top links, and save it for future use.
Thirdly, I would re-read my newly copied article, copy and paste pertinent phrases and paragraphs into yet another word document, which would become my specific research notes for whatever broad subject or particular assignment I was working on. I would place a set of four asterisks between each set of article notes with the APA reference at either the top or bottom of its related text, before saving said document to draw on when writing my essay in another blank document.
Therefore, if my course materials didn’t arrive in time, or when they ultimately did, I would already be somewhat across my topic and well into an assignment. It made me feel as though the inequity gap didn’t matter quite so much, because I’d found a pathway to higher education, and wasn’t that what I always wanted? It may have been messy, but I found payoff in the protaganism.
I found end notes particularly useful for referencing, carefully copying across each citation from my research document to my essay document as I went. I learned early on that to skip that detail and come back to it later was a disaster. My bibliographies were always done by hand, usually at the last minute when I’d send my assignment through to my professional executive assistant mother to arrange into alphabetical order, check my formatting and make it look pretty.
If I don’t have a sighted person examine the presentation of my work, triple check my spelling, make sure my paragraphs all line up, or a thousand other details which matter to the visual medium, I inevitably, all be it unknowingly, submit a document with multiple fonts, text sizes, colours and other unruly characteristics. Because no matter how much of a fine tooth comb I think I employ with my adaptive text to speech technology, spending hours going through it letter by letter looking for short comings, I miss so many finicky items that a sighted person can pick up in seconds.
This aspect alone is one of the more bitter limitations of my blindness to accept, because how is it that I can work ridiculously hard to prepare my document and still come up short? How easy it must be for someone who can see to scan their work for imperfections and quietly fix it with a blink of the cursor and click of the mouse without consideration.
Finally, as often the assignment title pages weren’t accessible to my screen reader technology, I would have to ask someone else to fill them out or rely on my tutor’s goodwill to forgive their exclusion. Then I would submit my assignment through a partially accessible student portal or directly via email to my tutor’s inbox as proof of completion.
However, apparently that’s not how my husband completed his undergraduate degree with all those high distinctions headlining his transcript. He simply read the course guide posted out a week before the beginning of each new subject, completed the course readings, and bought or borrowed the recommended text books. He then wrote all his work based on insights from the above mentioned sources alone, easily flicking between documents and computer screens with his working eyes. He easily scanned the online forums to comment on, as required for proof of participation.
How straight forward and stress-free, I think to myself as I begin to compare and comprehend the ramifications of what all this means on a larger scale. I’d assumed that as I grew older, the playing field of equality had become a little more level. After all, long gone were the days where I’d been taken out of my mainstream class for a few hours a week to learn braille, and still expected to maintain and advance from a forth grade reading level with only one tenth of the time or resources devoted to my literacy compared to my classmates. However, this astonishing disclosure has blasted that well loved and over nurtured ideology out of the water, my body ringing with the repercussions as I adjust to this new version of reality.
As a person with a disability, I have to believe the glass sculptures of inclusion are real as opposed to the flimsy narratives we tell ourselves. Often it’s not that we’re necessarily progressing toward a society that celebrates difference as much as we think, but rather finding more overt ways of dressing up our disdain for diversity in ever more elaborate frameworks. I’m shattered by this epiphany, and unfairly or otherwise, I can’t help but take out my frustration on my husband, even though he’s not responsible for my fantasy of forward motion.
What infuriates me most is how I’d witnessed his stress, struggle and strain to get things done, and mistakenly assumed the pressure he experienced was not dissimilar to my own. I knew he had a better base to build upon, but I hadn’t thought we were as worlds apart in our approach as we were, and this frightens me. Because if the inequity gap is as large as this in an undergraduate setting, then just how deep does this chasm reach in the real world? How the hell am I meant to find a meaningful footing if this is the kind of breach I’m facing? Suddenly everything feels impossible. I’m sad, scared and scrambling for a sense of solid ground I cannot find. My entire world view has been tipped off its axis, and I don’t know how to put it right.
You were spoon-fed your undergraduate degree like a baby, I want to scream at him, but I don’t. What’s the point in saying something I won’t be able to take back later. After all, what right do I have to be mad at him, when he was able to recognise the system and work within it. He gave them exactly what they wanted, whereas I hadn’t realised everything was already nicely laid out on the silver platter of our curriculum.
I had always envisaged the undergraduate system as having more shape and pliability to its dimension, not this shockingly stark square perimeter of distinct lines and sharp corners designed to bind a girl’s intellect. What disturbs me most is my failure to recognise it in the first place. I feel foolish for my oversight. As a blind person, I can’t always give what is wanted, but I’ll always give what I have in the hope it will somehow compensate for my inability to see.
I threw so much more than required at my undergraduate degrees and consciously justified them as fun, which they were, but that’s because I needed to balance the uneven weight of my expectations against my zigzag performance. I somehow thought if I could illustrate my process through my writing, referencing and bibliography, it would counteract the inequity.
I feel so ripped off, because not only did my husband receive better marks over all, but it took him less effort to reach those heights. How is this fair, I wonder as I struggle to gain control of my emotions. On the one hand I don’t want to minimise his accomplishment, but on the other I can’t help but accuse him of a pig-headed privilege I’m both mortified and magnetised by in equal measure. Oh, imagine what I could have done with that, I say regretfully. How easy it would have all been.
What it boils down to is this. I’m jealous of his undergraduate experience, but rather than admit it for what it is, which would be far easier, my tone betrays my carefully measured words and comes across as anger and condescension. Right now, right this second, I want him to feel just a little sorry for the contrast of our experiences, in the irrational hope that it will somehow validate mine, even though it’s entirely unreasonable and unrealistic.
Of course, he responds to my meltdown with his characteristic kindness, wisdom and understanding. Somehow he always manages to make me feel as though I matter, but without discounting himself in the process. I really admire his emotional agility, because without his willingness to be flexible in the face of my sometimes misguided outbursts, we probably wouldn’t be together.
I find little comfort in my intellectual advantage of knowing how to mine a database for treasure and he does not. Immediately I find myself wanting to share it with him, and show him all the sparkly pieces of information hidden beneath the semi-locked login walls and subscription pages. You are going to love this, I want to say, but I don’t know how to convey it with the majesty and meaning I feel, because I’m too busy grappling with my lies and bitterness for my love to be conveyed.
It’ll take me a little time to adjust, as I realise the honours year I always wondered about isn’t a giant gap in my knowledge or experience after all. Who knew those three and a half years of independent research within my undergraduate degree would actually give me an advantage in the long run. It means some of the disability angst I’ve been feeling regarding my PhD is unfounded. As it turns out, I’m in the perfect position to be taking on this kind of project. Not only am I coming with a wealth of industry experience, but the one thing I thought I was lacking all along has always been there. This by no means suggests it will be easy, but I feel better prepared emotionally for dealing with the next inaccessible article. What’s more, I have the most amazing, supportive and clever man by my side to help.
Who cares if our undergraduate experiences were different. It isn’t like we would have met otherwise, so what am I complaining about. Let’s get this PhD party started!