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.

Exploding Stigma with Heidi Latsky Dance

#MeOnDisplay means exploding stigma!

Earlier this week, I received information about an open rehearsal/audition with Heidi Latsky Dance and thought it sounded fun; I haven’t danced in a while and I decided that, whether or not I’d be accepted into the performance, it would be a cool experience. I did not realize the experience would begin before I even got there…

After emailing the coordinator my headshot and resume, I visited the company’s website. I did not get very far when I encountered a link called #MeOnDisplay. I clicked on it and read:

“Every day we see people on display on magazine covers and billboards and we KNOW we are not reflected in those images. It’s time we own our truths, imperfections, and fierceness.

Join us in redefining beauty one image at a time.

Take a STAND. Take a PHOTO.

Tell the world what being On Display means to you…”

So before finding out more about the company, I injected myself into their “Social Media Revolution!”

After thinking for a moment about what photo to use–I knew I wanted to use one featuring my blind cane–I decided on “Behold my Unisphere!” a photo of me pointing at a giant metal structure of the Earth constructed for the 1964 World’s Fair in Queens, as if I were a general indicating my territory, lately conquered.

I uploaded it to Twitter, but In my excitement I’d neglected one of the directions, so @HLatskyDance urged, “@DrMLGodin loving this! To us #MeOnDisplay means taking risks. What does it mean to you?! Let us know and we’ll add it to our gallery TwoHearts emoji [I don’t know how to make emoji on my PC!]”

My first thought was to write #MeOnDisplay means reveling in difference, but then I thought that might be too flabby, or worse, that someone else had already said it or something similar–I am a little OCD about uniqueness! So I read through a few of what others had said, then did a search for difference and sure enough I found something–wasn’t mine, but it was close enough, so I thought some more…

I’ve been reading Martha Nussbaum’s book Frontiers of Justice: Disability, Nationality, Species Membership, and my ears pricked up at her use of the word stigma. Referring to work by Erving Goffman she writes that “a central feature of the operation of stigma, especially toward people with impairments and disabilities, is the denial of individuality: the entire encounter with such a person is articulated in terms of the stigmatized trait, and we come to believe that the person with the stigma is not fully or really human.”

Ouch! But I take her point as she develops it into the recognition of the age-old amazement people who do not perceive themselves as disabled have when they discover something quotidian in the behavior of one they perceived as wholly different:

When such a person performs the most normal actions of a human life, “normals” often express surprise, as if they were saying, “Fancy that! In some ways you’re just like a human being!”

Though she is not speaking specifically of blind people here, it has certainly been my experience that sighted people get excited about the dumbest things with respect to my behavior and congratulate me on things they would ordinarily reserve for children. In other words, one who is disabled often feels the impressing people bar to be rather low.

I’m the first to admit that if you are going to judge me according to whether I do a bang-up job of walking a straight line or eating politely with a fork and knife, I will likely fail. But frankly, my expectations of leaving a mark on this world have absolutely nothing to do with the quotidian. Though I sometimes feel bad about my lameness at using my blind cane, mobilitying oneself to the bodega does not a genius make.

To take an extreme case, if we judge Stephen Hawking on the basis of normalcy, he too will fail, but of course, we do not. I’m not a (physics) genius and I shudder to think of the bodily sufferings he’s gone through, but when it comes down to it, there have been countless humans birthed into this world and deathed out again, and greatness is not always measured in physical ability.

Despite my shortcomings in using him, I love my blind cane, who, you should know by now is named Moses! My boyfriend and I do not agree who awesomely dubbed him Moses, thereby conjuring powers to part the endless Red Seas of New York City, but we agree there is magic in naming a stigmatized object–the lowly government issued white cane with red stripe and reflective tape–after a biblical man of power.

A couple years back, I was lucky enough to find myself in LA on a national commercial set and it was positively charming to see how the crew, when introduced to Moses, referred to him with no small reverence, and even, in some darkly fantastic way, seemed privileged to hang with him. This is what exploding stigma means: using the mark of shame to blow up perceptions!

I’m thrilled that Heidi Latsky’s #MeOnDisplay helped me articulate a thought that’s been rattling around my head for some time.