Patron saint of risk-takers
By Claire Steep
You haven’t lived, it turns out, until you have heard the Gospel of Matthew shouted in a lecture hall in Old English by an eccentric London professor. So I discovered my second year of university, conscripted into a semester’s worth of Old and Middle English. I could never get my teeth into Middle English, but Old English became an unexpected and lasting love. I didn’t love it for the alliterative half-metre like Tolkien, or for its declensions like the classicists, but for the stories.
My favourite of these tells of Eilmer, the flying monk. He made wings out of chicken feathers, leaped off a cliff and, predictably, broke both his legs. When the abbot confronted him about this lunacy, Eilmer assured the abbot that the fault was in the chicken feathers, because chickens are drawn to the ground. Eilmer resolved to make a new set of wings out of goose feathers and try again.
“No, Eilmer,” said the Abbot.
I don’t think the Anglo-Saxon scribes set out to write a parable about growing up with a disability or vision impairment but the fact is, I was Eilmer. I understood as much about my right-field hemianopia as he did about gravity and, because I only half understood, I dared to do the same as any fully-sighted child. I leaped into space with regularity and never once worried that the leap off that metaphorical cliff might prove catastrophic. Instead, I made a career of traumatizing my neurologist. I learned to skate, ride a bicycle and, unforgettably, ski. “You taught her to do what?” asked the neurologist, horrified. “But she can’t see!” In defense of my neurologist, she meant, “What if something happens?”
Years later, having compared notes with my brother, I can safely reassure her that we took an equal share of tramplings by snowboarders and, of the two of us, it was he—with his 20/20 vision—who was afraid of falling. Of course he was; if I was Eilmer the flying monk, he was a much younger abbot. It occurred to him to worry about risks. All I wanted was to get on with the complicated business of being normal.
A partial picture
“Being normal” was largely hampered by other people’s insistence that my vision is somehow abnormal. It is, but only to sighted people. And this was my problem; having never known anything but a right-field hemianopia, I had nothing to compare it with, which meant I had no vocabulary to describe what I was or wasn’t seeing. Asked to explain, all I could do was insist what I saw was normal—which of course, to me, it was. Consequently, the business of advocating for me got handed over to medical textbooks, which, while technically right, also got a lot wrong.
For instance, the only good way of depicting a hemianopia is to show a picture in which half the image is blacked out. If I had a penny for every person who thought that I have gaping black voids in my vision, me and the opinionated tortoiseshell cat I cater to would be set for life. There are, in fact, no gaping black voids. There aren’t even black pinpricks. Contrary to what a well-intentioned eye doctor might think, it is nothing like being half-blind, which suggests a much lower light perception and vision quality than I have. The best I can do is to say that you could stand next to me in florescent orange and wave a neon flag but, if you’re on my right side, then (unless that flag also features a cowbell or other auditory clue) I will neither see you nor know you are there.
This meant, indirectly, that I was slow learning to read. In fact, “People Who Knew” decided I would never be able to read, because faced with Bob sat on cat on mat at age six, I could identify none of the words on the page. I could, however, tell you that “Bob sat on cat on mat” was a badly constructed sentence—not only that, I knew it was a dull badly constructed sentence. Its sequel, Ten men in tents, wasn’t a huge improvement. Little wonder—or it should have been—that I rebelled, aged eight, against the lot of them: Bob, cat, mat, the men in tents, and quietly read A Christmas Carol. Everyone thought it was a miracle. Overnight, I progressed from having no reading group to being in one of those extra-help groups schools sometimes run. They wanted to know how it had happened, who had done it and what had made the difference. I didn’t much care; I had run out of Dickens and wanted to be left alone to read Rebecca of Sunnybrook Farm, thanks all the same. Anyway, as far as I was concerned, the thing that had made the difference was progressing from the uninspiring Bob books to the moderately interesting “I Can Read” series, where the characters get to do more than sit on things.
A person apart
As for the extra-help group, rarely have I been more frustrated. It was mortifying to be there—not because of any overt awfulness, but because it made me acutely more aware of my eyesight than I had been since I’d had to wear an eyepatch to kindergarten. I wanted to be included in the same classes as my friends; Whatever my limitations, reading comprehension did not make the list.
It happened all through school; guidance counsellors sent me for tests to clarify my learning disability, physical education teachers recommended I be exempt from gym classes on the strength of my eyesight and benevolent art teachers designed projects to accommodate my vision. I wanted none of it. I resisted the urge to jump up and down and shout into next Tuesday that the problem was with my eyes, not my learning, and how exactly did a restricted field of vision affect my ability to do track and field anyway? If blinkered horses—who are the creatures I think most likely to best understand right-field hemianopia—can do it, why couldn’t I? It’s probably just as well I didn’t discover Eilmer and his chicken wings until my 20s. Otherwise there’s a real chance I’d have handed his story to every well-intentioned teacher who tried to set a stricture on me and hovered over them while they read it, before following it up with a sermon lifted from the Gospel of Claire entitled “Let Me Take Risks.”
Back to normality
Luckily, this never proved necessary. At about grade four the extra-help group dissolved, the school having decided that I did, after all, know what I was reading about. It also graciously accepted that my Anglo-Saxon approach to spelling—that is, varied, creative and frequently imperfect—had more to do with auditory learning than wonky eyesight. An enlightened gym teacher even fought the neurologist’s note in the name of my physical well-being; she didn’t care if I hit the tennis ball, just that I was active.
I was thrilled. The neurologist wasn’t wrong to be concerned; Eilmer will vouch for the fact that dire things come of leaping off cliffs, however confident the leaper. But if I’d stopped to consider the consequences, the list of things I would never have done becomes insurmountable. If I had accepted my lack of fine motor skills, I would never have learned embroidery. Much less would I have learned to cycle, swim, skate, ski or portage a canoe. I certainly wouldn’t have ended up in Scotland listening to a posh London accent shout the Gospel of Matthew at me and, if I hadn’t done that, I would never have encountered Eilmer the flying monk or stumbled across the means of advocating for myself and others, never mind the textbook argument for letting me take all the risks I want and need to—provided I’m not leaping off cliffs.
Claire Steep read English at St Andrews University, Scotland, for five years. She blogs about books and music at choristerathome.com, and is currently a communications intern for Abilities.