Camille Guy recounts how she went from “four eyes” to “blindie”, and its effect on her reading.
The printed word fascinated me always. Sitting on the mat at Waterview Primary School in the early 1950s, I watched infant mistress Mrs Shanks draw words on the blackboard in coloured chalks, and I found it exciting linking those letters with actual meaning.
There were no books at home, save Dad’s engineering trade text books, so from age six I read the Auckland Star. No wonder I became a journalist. When I was unhappy, I invariably withdrew into books, soon borrowed regularly from the Pt Chevalier library. If I could contrive it, I spent primary school midday break sitting in the lunch bay with a book. At home I would sneak into the bathroom late at night to read.
Research now suggests that early close work might trigger the onset of myopia. By seven I could no longer decipher those words on the blackboard. I didn’t understand this was not normal and that I should mention it to an adult. Instead, bored, I became a trouble-maker in the classroom.
The problem was eventually recognised, and I was taken off to Mr Calvin Ring, ophthalmologist. I suspect he warned my mother that I was at risk of later blindness, since she always seemed to fear it. I had no such anxieties, and trucked on wearing ever thicker-lensed spectacles, and getting used to being called “four eyes”.
So it came as a shock in my 50s to discover that one of my retinas was haemorrhaging. My elongated eyeball had finally stretched the retinal layers apart. New and fragile blood vessels had grown between the layers and eventually they broke and bled, destroying the photoreceptors in the central retina or macula.
Still, I had one good eye and that sufficed for reading. Until, that is, 18 months later when the good eye turned bad in just the same way. Now I could no longer read even large print books. Nor could I recognise faces. “Hullo, blindie,” my son said to me one day. I was oblivious that we were both waiting at the same bus stop.
Just as frustrating as not recognising my nearest and dearest was no longer being able to read labels on supermarket and pantry items. All the newly blind face the frustration of using hair product for toothpaste or pouring balsamic vinegar instead of sweet chili sauce on some morsel of food.
As well as lacking the chief solace of losing myself in a book, I felt distressingly under-stimulated. Initially, I was not blind enough to register with the Royal New Zealand Foundation of the Blind (RNZFB), so its services were unavailable to me. I scavenged the audio books section of the public library. The librarians would ask me what books I preferred, and I would say “cutting-edge contemporary fiction or non-fiction”, and they would sigh over their limited catalogue. From having access to a million books in the collection, I was now confined to around 6000. If I eliminated romance and murder mysteries, there was not much to amuse me.
On the computer I enlarged the font, but soon enough that no longer compensated.
By then I was finally eligible for RNZFB membership. The troops moved in, bringing a four-track cassette-tape player and membership of the library, which doubled the number of books I could access. It also gave me magazines, which included selections from the New Zealand Listener, Cuisine, and North and South. In December 2011, New Zealand Books also became available.
As far as journalism went, this sight loss was a challenge. I could no longer read words on the computer screen. Surfing the web was impossible. I could not read the screen on my mobile phone. For a while I rented a closed circuit television device that scanned printed documents and projected them onto the monitor. But despite regular and heroic surgery, my sight continued to deteriorate. Magnifying words sufficiently to read them on a screen meant I could only fit in three or four at a time, which is a tedious way to read.
As my sight loss was charging ahead, so was adaptive technology. This was both good and bad. The computer software and technical devices that would help me do not come cheap, and all too soon my latest little gadget or app would be out of date.
Today, to decipher mail addresses or pantry item labels, I have a portable video magnifier, a device with an inbuilt camera and screen, which magnifies up to 10 times. Mine is a Ruby (around $900), wallet-sized, and it magnifies white on black, black on white, and various other colours. The image can be frozen so that theoretically I could hold it up to an item on a high supermarket shelf and identify the product. I use it daily.
Identifying CDs in my music collection or box files in my office, I use a remarkably cheap (around $250, and cheaper to RNZFB members) item called a Penfriend audio labeller. It looks like a chubby pen but is actually a digital recorder. Treating the Penfriend as a microphone, I can record onto purchased peel-off labels the name of anything I care to label. To read it, I simply point the Penfriend at the label and it speaks to me.
Even smarter devices are available. Several of my blind friends have software on their cellphones which allows them to scan any printed document, say a restaurant menu, and the phone then reads aloud whatever has been scanned. Some will even translate from several other languages.
I had the advantage of being younger than many of the newly blind. I was also somewhat computer literate, although like most people of my generation I understood computer technology on a “need to know” basis only. I was able to attend a 10-week computer course at the RNZFB, which was developed by Harris Rosensweig, a brilliant American import from Silicon Valley. As well as familiarising us with adaptive technology, our patient tutors taught us all we should already have known about how a PC works. They would, for example, unplug everything while we students were at morning tea. We would return to our work stations to find nothing was operating, and have to sort it ourselves. We learned to forgo the mouse in favour of keystrokes, and each morning we brushed up our touch typing. By the end of the course, I was almost talking the same language as my kids.
To use the computer I have JAWS, a screen-reader programme. Using a text-to-speech synthesizer, JAWS converts most of what is on my computer screen – popup boxes, command buttons, menu items, and text – to speech. Other screen readers include NVDA, Thunder and Guide. Some newer computers, such as the iPad, come with built-in screen reader applications.
I also have Open Book software which allows me to scan a document or page of a book. It converts the text into a format which yet another artificial voice reads aloud. Friends wonder how I can stand these Stephen Hawking voices. In fact I become quite fond of them. They read uncritically and do not make editorial comments, as some of my friends are inclined to do.
As for books, the RNZFB and I have gradually progressed from cassette tape and CD recorded books to MP3 versions. The difference is that an MP3 or computer audio file can be downloaded either from an internet company such as Amazon or Audible, or from a public library website. If I do not want to listen sitting at my computer, I can attach a portable MP3 player by USB cable to my PC and transfer the book onto the battery-operated portable device. This is really convenient for travelling, though it helps to remember to take the battery charger, since mine stores only about five hours of running time. E-books are another way to go, to be read on devices such as the Kindle. The trouble is finding a source of e-books compatible with my particular screen readers.
Since most visually impaired are elderly, many suffering from age-related macular degeneration or AMD, adapting to this high-tech way of reading is not easy, and technology is still accelerating. Yet there is no agency to help those blind enough to have to give up driving and unable to read even large print books, yet not eligible for RNZFB services. I belong to a volunteer group called Retina NZ, and we offer a guide to the newly blind which includes a section on reading. I also edit the Retina newsletter and we try to keep pace with new developments. But our funding is meagre and our outreach limited.