Winter Wonder Maze: My first week without a home of my own and blind

I wish I could claim “winter wonder maze” as my own term for Alabaster‘s mother’s incredible Xmas installation–involving 42 trees, countless elves, Santas, snow babies (little snow men), thousands of feet of garlands, lights, a train set, and whole mountain ranges of glistening cotton snow, but I can’t. It was he, with whom I set out vagabonding, that comforted me with the coinage.

Winter village with train set in front of TV playing scary movie with closed caption, "We're gonna come find you. I promise."

I had been struggling with my inability to navigate the path to the kitchen which cuts through the living room–the nexus of Xmas décor–not only because there are so many obstacles but also because in order to do so one must pass between the watchers of the giant TV and the TV itself. Moving slowly and uncertainly as I do, prolongs my status as obstruction on the one hand and moving picture of interest on the other. I told Alabaster that I could not bring myself to do it. He reminded me that it would be easier when the Winter Wonder Maze came down. But that will not be until January 2.

It was Alabaster also who, when I apologized for not being more present because I was concentrating so hard on just getting around the house, made the connection between what I am experiencing and John Hull’s struggle in Notes on Blindness, which we saw last month at Film Forum.

Towards the end of the film, Hull and his wife and kids travelled from England to Australia to spend time with his parents. He had not been seen by them since the final calamity struck in England, and their shock and awkwardness regarding their adult blind son combined with his feelings of incompetence in an unfamiliar place, made the visit one that was uncomfortable physically and psychologically, gladly left behind and never to be reenacted. In the film, the trip to Australia represents a climax of struggle for John Hull, after which Hull experiences such a sense of relief that it leads him to his ultimate acceptance–almost embrace–of his blindness.

It’s true that I, like Hull, feel a little helpless and useless in this unfamiliar environment, but it is different insofar as Alabaster’s parents only know me as a blind person, and seem mostly curious and accepting. On our first full day here, his mom took me on a touch tour of the house so that I could feel the elves and Santas and trains and villages with church steeples set in snow. The biggest obstacle to my comfort is that I’m really bad at being a blind person. While I feel ok stepping slowly around the several Xmas trees and candle-laden tables in the basement living area to get from the couch where I sit writing to the bathroom, I prefer it if no one is watching me play this very unexhilarating game of pinball.

Once alabaster’s dad came downstairs just as I hit the couch on the far side near the bathroom, but on the wrong side. So with him looking on, I had to negotiate around the couch, Xmas tree number 33, hit the glass cabinet (gently and as a comforting reference point) to slide into the bathroom with a sigh on my side, and some little congratulatory remark on his.

Godin in red, hand on hip, standing in front of winter wonder mountain village on top of mantle.

I work hard to do my slow bumbling thing out of the sight of others, which is why traversing the path of the TV and train room to the kitchen is unbearable, and I generally hop on the Alabaster train. This is not necessarily less embarrassing than going it solo, but simply gets it over with quicker.

Other parts of the sprawling house are easier to traverse because they are less spectacle inducing, though it must be said that the architect was stingy with right angles. The stairs into the basement living room where we work ascend towards the front door so that it is just a matter of turning the corner to the left to slip down the crooked little hallway to our bedroom on the main floor. Well maybe not so easy, for there are several fickle Christmas wreathes extending from the wall like the human-arm candelabra holders in Cocteau’s Beauty and the Beast.

When we first visited a year and a half ago, it was springtime. If I wanted to get to the upstairs living room or kitchen I would follow the ungarlanded rail guarding the stairway and hit my comfy chair to sit and experience TV with one ear and listen to social media with the other. Or, I could turn right at the end of the railing, following the path of the mantle, into the dining room (which in other seasons is decked out in a nautical theme) and continue on into the kitchen, thereby avoiding the whole discomforting road between the couch and the TV. Unfortunately, that path is closed to me until the snow melts.

I guess this all begs the question why I’ve put myself in this position. Why have I left my comfortable Astoria apartment where I’d been shuffling from room to room for nearly 17 years, for parts unknown? Our plan is to be hobo artists for a year and then settle somewhere–maybe back to NYC, but probably not. And although I could not imagine taking this trip by myself at this point in my life (both for practical reasons as well as reasons of the heart), the experience is, by design, unsettling. A learning experience. Will I succeed in feeling more comfortable moving through the world as a blind person at the end of it? Will I be better at it? I don’t know.

The fact is that I never imagined staying in that Astoria apartment for so many years. I did not even imagine staying in New York for that long. When I arrived in New York to attend grad school, I had academic stars in my eyes. I thought I’d continue to move east for a while, slipping into some professorial path that involved feeling at home in many cities of the world. I’d already moved from my home in San Francisco to New Orleans to New York, and forayed to Paris during my first two summers in grad school, but then the adventure–at least as a forward moving trajectory–stopped.

Many factors changed my destiny and my mindset: my distractibility, my blindness, my ambitions, academia, downtown performance, karate (specifically a talent show night that put being a comedian into my head!), and a feeling that academia was not exactly what I had wanted when I was a kid, but seemed the most likely.

Strange to say that the ADA has done great things with education regarding blind people since 1990, but less in what is possible after school. Getting a college degree and continuing onto grad school seemed the least resistant, most doable path for me.

Blindness forced a desire for comfort and stability that was not in my nature. When I was a visually impaired teenager, my biggest fear regarding the high probability of future blindness was a loss of independence. These days I’m not so independent physically, but my mind feels quite free.

Although I did not pursue a career in academia, the mission remains the same: to think expansively about blindness as both a physical experience and a metaphorical  construct that is in dialogue with some of our most fundamental conceptions of humanness. From my dissertation to my short-lived standup endeavor                                                                                 , my solo show to this article, I attempt to expose and collapse distinctions between these two ways of thinking about blindness, to trouble the waters between the literally blind and the figuratively blind, seriously and with humor.

But how can I continue to fulfill this life’s work if I close myself up to the world? I think the comfort of living in the same place for so long made me less open to humanity in all its particulars. So I’m out here in the wilds of Colorado, not yet having an adventure in the ordinary sense, but priming myself for it.

winter wonder maze view from front door, including  descending stairs , with garlanded  rail and Christmas lights extending into the distance.

A Blind Person’s Notes on Notes On Blindness and Touching the Rock

Notes on Blindness movie poster featuring John Hull with visual memories superimposed on his head
Upon entering the Film forum, where Notes on Blindness, an innovative documentary centered around the voice of John Hull recorded in the early years of his complete vision loss, is playing, I was offered a headset, but told that I should only wear it over one ear. It turned out that I could not mix the audio description track with the soundtrack. The only solution was to put the audio description on low in one ear and hook the other plush earphone–like the kind one uses for recording–around my head to rest behind the other ear. The contraption was a little tight and began to squish my brains after not too long, and I should say that I don’t have a very big head, at least not literally.

Though the system was not ideal, the audio description turned out to be quite pleasant. And yet I found sitting in my own little audio bubble to be a bit strange. Usually my head would’ve been resting on my boyfriend’s shoulder to facilitate his whispered descriptions. The sensation of separation was both cool and lonely, our only connection the shared bag of popcorn. As Notes on Blindness suggests, blindness is a paradoxical gift–not one Hull (or I) would have asked for, but still with unique compensations, one being the closeness that comes with occasional dependence, a closeness that can sometimes be awkward and other times charming.


I was excited to experience Notes on Blindness because I remembered reading Touching the Rock (John Hull’s recordings in book form) when I was new to New York and grad school. At that time, some of his observations resonated, such as the social difficulties of negotiating parties and bars, as well as the interesting, and not always unfortunate, adaptations one makes when one is forced to read books with one’s ears instead of eyes, such as the development of a good auditory memory and acute attention to the spoken word. But at that time in my progressive cone-rod dystrophy, I steadfastly existed as a visually impaired–not a blind person–and could not relate to the vast majority of Hull’s observations.

Twenty years later, I find that Hull’s words resonate more fully, but that his experience still differs from my own in some fundamental ways. For example, now I understand his sometimes strong desire “to hide my face from others” and wonder with him, “Is this a primitive desire to find some kind of equality? Since your face is not available to me, why should my face be available to you?” But I do not feel Hull’s “horror of being faceless, of forgetting one’s own appearance, of having no face.” I’m very aware, self-conscious even, of my face being present and vulnerable to the gaze of others. In this way, I believe my experience of blindness is colored by my experience as a woman, with all its attendant expectations of beauty.

Of course, Hull is but one individual who lived one path that included blindness. He was also a father, a husband, an educator, a deeply religious man born in a particular time and place, whose unique and philosophical observations ought to chip away at, rather than fortify, the monolith called blindness.

Hull alludes to the impossibility of speaking for all blind people in his preface “To the Blind Reader”: “Blind people differ from each other as much as sighted people do. I do not claim to speak for you, but only for myself. You do not need to know what blindness is like, because you are blind.” As a matter of fact, I am intensely curious to learn about his experience of blindness because it is, in many ways, very different from my own. I do not accept his assertion that I “know what blindness is” for anyone but myself.

In “The ‘Dark, Paradoxical Gift’” (first published in 1991 in The New York Review of Books and republished as a forward to subsequent editions of Touching the rock), Oliver Sacks writes, “There has never been, to my knowledge, so minute and fascinating (and frightening) an account of how not only the outer eye, but the “inner eye,” gradually vanishes with blindness; of the steady loss of visual memory, visual imagery, visual orientation, visual concepts,… into the state which he calls ‘deep blindness.'”

Sacks did not at first question hull’s assertion of “deep blindness”–where physical sight loss leads inevitably to a shutting of the inner eye. But almost twenty years later, in The Mind’s Eye he admits his mistake:

“I assumed that Hull’s experience was typical of acquired blindness, the response, sooner or later, of everyone who loses sight–and a brilliant example of cortical plasticity.

“Yet when I came to publish an essay on Hull’s book in 1991, I was taken aback to receive a number of letters from blind people, letters that were often somewhat puzzled and occasionally indignant in tone. Many of these people wrote that they could not identify with Hull’s experience and said that they themselves, even decades after losing their sight, had never lost their visual images or memories. One woman, who had lost her sight at fifteen, wrote:

“‘Even though I am totally blind … I consider myself a very visual person. I still “see” objects in front of me. As I am typing now I can see my hands on the keyboard…. I don’t feel comfortable in a new environment until I have a mental picture of its appearance….'”

Those words could have been written by me, so close are they to expressing my reliance upon and constant sense of the visible. Unlike Hull who loses his visual memories and the ability to create new ones, I, like the woman above, use the inner eye to map and remember my world as I encounter it. For example, although I cannot in any sense have been said to experience a recent dinner party–From the outfit I was wearing to the position of others at the table to the food on the plate in front of me–through my physical eyes, when I call it to mind, it appears as a vivid tableau, punctuated by conversation and smells, but occupying mental space just as those memories from before vision loss.

In the Mind’s Eye Sacks presents Hull’s concept of deep blindness in dialogue with alternate neurological responses to total vision loss .Sacks writes, “Had I been wrong, or at least one-sided, in accepting Hull’s experience as a typical response to blindness? Had I been guilty of emphasizing one mode of response too strongly, oblivious to other, radically different possibilities?”

Sacks goes on to relate the story of Zoltan Torey and others blinded, but retaining a strong sense of the lasting vitality of the inner eye. The experience of blindness reveals itself to be as complex as the experience of sight. Even though Hull’s experience of deep blindness is not my own, his philosophical and sociological grappling is fascinating and intellectually stimulating, as well as entertaining.

In Notes on Blindness, I found Hull’s considerable insights smothered by the family recreations and straining narrative–a narrative that is precisely flouted in Touching the Rock. Notes on Blindness seems not to be fueled by Hull’s wanting “to understand blindness” but rather by the more quotidian formula of overcoming blindness, his original conception of deep blindness barely alluded to. The movie attempts to shape the meandering thoughts of a very smart and philosophically-minded blind man into a domesticated docudrama, where Hull’s recorded meanderings project a bleak arc.

But, like most blind people I know, Hull has a lively sense of humor regarding himself and the sighted people he must deal with, which sparkle throughout Touching the rock that would have added much fun and insight to the film. For instance in a 1984 entry entitled “Does he take sugar?” Hull describes behaviors painfully familiar to me:

“This situation often seems to arise when I am getting in a car with a group of other people. ‘Will you put John in the back with you?’ ‘No, I’ll put him in the front with you.’ ‘All right, you put him in then.’ At this point, I interjected, crying out with an exceedingly loud voice, ‘John is not put anywhere, thank you very much. John is asked if he has any preferences about where he sits.’ At this, all my friends laughed uproariously and were covered with apologies and confusions. On a similar occasion recently, I shouted out, ‘Hey, you guys, don’t you talk about me as if I’m not here.’ This, again, brought shouts of laughter and a mixture of apologies, agreements and congratulations.

“It is, of course, very embarrassing for intelligent and sensitive people when they are caught out like this, in using the ‘Does he take sugar?’ approach to a disabled person. These people are all sensitive, and well aware of the humiliation which this approach implies. So the question arises, why do they do it?

“It is so easy to marginalize a blind person; indeed, in certain situations it is almost impossible not to.”

There is great pathos in the film, but I found the highly stylized and self-conscious metaphorics a bit much, though that could in part be a problem of translation–how many times can a person hear “fade to black” without feeling bored? The raining indoors (and without the family taking notice of it) also seemed needlessly artsy and contrived–not nearly as beautiful as Hull’s intricate description of the sound picture made by rain earlier in the film.

On the other hand, the filmmakers neglect what, to my mind, is one of the most outrageously visual scenes in Touching the rock. Perhaps they felt that a blind man stretched upon an enormous stone altar at the front of an abbey that he had learned by feel, incrementally, and alone in the dead of night, would be too weird or offensive. But it is precisely this image that expresses the whole body seeing that seems ultimately to offer Hull compensation:

“Every night I returned, to explore a little bit more. From pillar to pillar I would work my way, counting the steps, remembering the angles, always returning to the foot of the stairway.

“After several nights, I discovered the main altar. I had been told about this, and I easily recognized it from the description. It was a single block of marble. Finding one corner, I ran my fingers along the edge, only to find that I could not reach the other end. I worked my way along the front and was amazed at its size. The front was carved with hard, cold letters. They stood out boldly, but I could not be bothered reading them. The top was as smooth as silk, but how far back did it go? I stretched my arms out over it but could not reach the back. This was incredible. It must have a back somewhere. Pushing myself up on to it, my feet hanging out over the front, I could reach the back. I did this again and again, measuring it with my body, till at last I began to have some idea of its proportions. It was bigger than me and much older. There were several places on the polished surface which were marked with long, rather irregular indentations, not cracks, but imperfections of some kind. Could it have been dropped? These marks felt like the result of impact. The contrast between the rough depressions and the huge polished areas was extraordinary. Here was the work of people, grinding this thing, smoothing it to an almost greasy, slightly dusty finish which went slippery when I licked it. Here were these abrasions, something more primitive, the naked heart of the rock.”

I fear I may be criticized for having anything negative to say about a film that I should appreciate, perhaps, simply because it attempts to illuminate, in these dark times, a unique perspective, and even includes me, a blind movie-goer into the experience by offering audio description. I think it would be a fair criticism; I would not even feel comfortable writing about–even offering, in my meandering way, a review–on something that was not ostensibly accessible to my appreciation of it. So the opportunity is not to be squandered.

I used to love movies and have in my mind’s eye scenes, decadent visual images (several from The Cook, The Thief, His Wife, And Her Lover, for example!), to remind me that filmmaking tends to be extremely visual, though many blind people I know get quite a bit from listening to movies. In other words, I am delighted to write about Notes on Blindness and thrilled to have had an afternoon at the movies to enjoy something that was made, at least in part, with someone like me in mind. I hope there will be more.