Eye and Prejudice: A vision for equity
Nalini Haynes is passionate about reading, writing and editing; she's also vision impaired. In today's Notes, Haynes shares her daily experience of reading – describing the challenges, workarounds and economic burdens of negotiating access to the written word.
'You can read?' asks an acquaintance, looking at my mobility cane.
His reaction is better than some. Last year, a publisher volunteered as mentor on a disability program; when she learnt I'm vision impaired, she said she didn't want to be my mentor and that I'd never get a job in the industry. Another publisher advertised an assistant publicist job; I can do everything in the job description, but they wanted a drivers licence. I tried to explain about trains, trams and taxis to no avail. My acquaintance asking questions and listening to answers is a pleasant change.
I am a Person With Albinism, a PWA; colloquially, you might know us as albinos. Beauty is not just skin deep; my insufficient pigment that makes me paler than most people also affects my eyesight. The short explanation: fovea and maculae, parts of your eyes you use to see, are made up of pigment. Apparently I don't have any fovea, used for facial recognition and reading, and my maculae are underdeveloped. My diagnosis includes other things like transillumination of the iris, nystagmus and floaters – but let's not dwell on those for now. Glasses and surgery cannot correct my eyesight.
But yes, I can read. When I was a child I loved to stay indoors: away from the burning rays of the sun, not chasing after balls I failed to catch but, instead, reading. Now that I'm older and age-related long-sightedness means I can't literally put my nose in a book any more, reading has become more of a challenge. Walk with me for a day – or a few hundred words.
Light cloud shields the midday sun's harsh glare as I power walk through one leafy suburb, then another. Birds chirping are just audible over the scrape of my cane rolling from side to side, leading my way. At the post office, a white card banded with slashes of red is a beacon of promise in Aladdin's cave. I exchange my signature for a yellow parcel.
On to the train station, clutching my unopened parcel. I sit on a bench and prop my cane against the seat. Both hands now free, I open the parcel: two Clockwork novels by Beth Cato, as promised by HarperCollins in New York. Earthy tones and quasi-19th-century clothing on the covers evoke the steampunk genre – but the books’ titles, the author's name and 'proof' are the only words large enough to read at a glance. I return the books to their padded envelope.
Technology is enabling me to keep reading, to fully embrace my editing studies and to engage with the online community electronically.
I shed the weight of the world when I shrug off my backpack. Feeling inside, I extract my reading glasses and a nearly–A4 textured leather case holding my Kindle DX, a discontinued model. The screen is about 24 centimetres and the text is set to roughly double the height (or four times the overall size) of standard text in a book.
I love my Kindle … with reservations.
If I have to choose a book in the Kindle’s index, I struggle to read the immutable tiny text. By the time I've selected a book (if I can even find it), I have a headache and eyestrain. Headaches due to glare and eyestrain occur daily; anything exacerbating them is not my friend.
Nor am I fond of the prevailing standard of ebook formatting. Forced line breaks cause unprecedented widows and orphans. Extraneous markup is often included in the text. Weird and woeful errors spoil my reading experience. Like The Mikado, I aspire to the punishment fitting the crime: all those who badly format ebooks – a mob of editors and book designers – should be forced to read their works until they hurl their e-readers across the room and stomp on them in fury. Then they’d be given replacement e-readers. Rinse and repeat.
The train arrives. I board then text my partner. Last year, a friend gave me his old iPhone 3, which provides large text for SMS and allows magnification on the screen – but it’s still too small to allow me to comfortably engage with the internet. I dream of a large phone screen enabling me to do radical things like tweet at events.
My partner is meeting me at university to help me with some photocopying – the text on the photocopier screen is horrendously small. A few text messages back and forth and our meetup is organised.
Arriving in class, I sit at a table with a CCTV – but I’m not talking about a security camera. A widescreen monitor is suspended by a steroid-amped arm extruding from a document tray on the table; it’s closed-circuit TV because live feedback allows me to wield the Dreaded Red Pen of Editing, marking up manuscripts printed in tiny fonts.
My partner and I don't have holidays: we purchase disability access instead.
Later, at home, I power up my Mac. Its large screen and accessibility features allow magnification within documents. I'm writing this with Word set to 12pt font and body magnification set to 204%, although the screen sits at the front of my desk. Alternatively, my desktop can be magnified so I only see a portion at a time. I may not visually notice an error message, but an audible prompt reminds me to search for the popup window when there’s a problem. I feel for the bumps on letters ‘f’ and ‘j’ to position my hands on the keyboard. My cursor is extra large; I still lose it, but waving the mouse around, causing cursor movement, usually helps me to find it again.
When I read PDFs or access articles on the internet, I prefer my desktop. My more compact laptop also allows for magnification, but its screen is so small that I have to scroll PDFs from side to side when reading. If I must read a PDF on my laptop, I often copy the text to Word and enlarge it to 22pt font. This causes formatting problems, but it's better than scrolling from side to side. Reading moving text is hell, causing severe headaches after excruciatingly slow reading.
Don’t get me wrong – I love living in the future. As I struggle with age-related long-sightedness as well as my genetic and associated developmental eye conditions, technology is enabling me to keep reading, to fully embrace my editing studies and to engage with the online community electronically. Yes, this technology is expensive – confoundingly so when it's aimed at a disability market rather than the mainstream – but it enables me access to the things I love.
Employers sometimes mistake vision impairment for incompetence, or fear having to pay for disability access. Neither is the case.
It took 6 years for my partner and I to purchase my desktop magnifier. A friend gave me my iPhone because he'd upgraded. My Mac, the love of my life, emptied our bank account once more. My partner and I don't have holidays: we purchase disability access instead, when we can scrape together enough money. Other people aren't as fortunate.
Most people with vision impairment are, like me, unemployed, as reported by the ABC and Vision Australia. Employers sometimes mistake vision impairment for incompetence, or fear having to pay for disability access. Neither is the case and Job Access, a government agency, provides grants for disability access, even for part-time employment.
If you want to help, don't make assumptions. Ask questions. Listen to the answers. Give someone with a disability an opportunity. If I had a job, even a part-time job, it would make an incredible difference. Not only in terms of income – making disability access affordable, and the occasional holiday a possibility – but in becoming part of the community.