Tuesday, June 10: It’s the last day at the school where I am teaching. Jason, the director, hands out gifts to the staff members who are leaving. I get a tin of peach tea from Teavana and a coffee mug that says, “It’s not the journey, it’s the destination.” Everyone else gets a framed picture of all of us, standing at the top of Mount Philo, our arms raised in celebration.
Afterwards, because I trust my coworker, Jim, and because Jim is also an artist, I show him the tip of my disappointment. “It was Kristin who picked out the gifts, not me,” he says. “I’ll make sure you get a picture.”
Thursday, June 12: My mom sends me an article about a visually impaired artist who just graduated with a BFA from NYU, with the headline, “Art Student Hit by Truck Loses Sight but Keeps Vision.” This is her way of reaching out, but it’s hardly comforting.
Sunday, June 15: The gene therapy trial for which I am eligible keeps getting pushed back. Just for the hell of it, I poke around on Clinicaltrials.gov to see if there are any other options. There’s an FDA-approved stem cell study. It costs $20,000 to participate. SO far, all of the evidence is anecdotal. But what a relief it would be to transition to sightedness physically—much easier, I suspect, than transitioning through language. Social constructionism can only get you so far. I email the doctor in charge of the trial.
Wednesday, June 18: If there is only one transabled, physically blind, sighted-identified artist on Tumblr, does that artist exist?
Friday, June 20: I try (with very little success) to explain the concept of genderqueerness to my mom. If she doesn’t get genderqueerness, she’ll never get transibility. She likens my rejection of my blindness to her rejection of the superficial aspects of South African Jewish culture. I know that the parallel doesn’t quite work, but I can’t entirely verbalize why. She expresses concern at my insistent references to Transability. “It’s too fringey,” she says. Plenty of neuroqueer people face this sort of disqualification or dismissal from their parents, so why am I so susceptible to surrender?
Saturday, June 21: I want a break from my territorial identity politics, so I lose myself in the blog of Julia Bascom. She writes, “It [singing] destroyed me. I loved this, I was so good at it, it felt good and right and perfect, and yet any attempts to communicate about this were miserable failures.” Does Julia feel about singing the way I feel about color? (A knowledge that defies the strictures of language, a tantalizing touch, like the vanishing edge of orgasm.)
“People need stories,” Julia says. If you spend your whole life watching stories where you “had no part, no point of entry, and no value,” you start to doubt the existence of “people who move like you.” Julia found Community and Glee; I found slavefics, many of which, in essence, are stories about being mirrored into personhood. In my favorite passage from my favorite fic, The Prize, Kirk is Spock’s slave. After having just discovered his slave’s prowess at chess, Spock asks, with genuine curiosity, “What are you, James Kirk?” Kirk responds in part, “I'm a man. …Compared to Savak you've been kind to me, treated me well--but because I'm looked on as some sort of delicate, exotic fancy, you've kept me imprisoned in this tent. I want--I need--the open air sometimes, the freedom to run--to exercise my body and my mind. I need companionship, someone to talk to who'll listen to me, who'll take me seriously. I used to talk to my dog the way you talk to me." Spock eventually does take Kirk seriously, and the two transcend the master/slave dynamic.
Two weeks ago, after Jim promised to send me that picture, that scene from The Prize was the first thing I thought about.
Thursday, June 26: I find out that I am accepted into the stem cell trial. I also do a bit more Googling, and discover that the FDA-approval was essentially a scam.
Of course, I make the mistake of mentioning my “acceptance” on Facebook, and get a slightly harried phone call from a person from one of the major retinal research organizations. “I know how impatient you are, how much you want the cure.” she says. “And trust me, I feel the exact same way. Last night, my son got locked out of my house, and he didn’t have his cane. It was dark, and he has always been so dependent on his light perception.”
Friday, June 27: The woman from the disability services office at my university calls, and she won’t. Stop. Talking. (“Plan this schedule, test these documents, book the Access Van in advance, etc., etc.). In between yoga breaths, I repeat the words my friend Beth said to me once: You are uncomfortable with this conversation because you have an ambivalent relationship with access.”
Monday, June 30: The New York Observer publishes an article about the accessibility of art museums for the blind. I am quoted briefly; of course, my dermo-optical perception (touching colors with my fingertips) is referred to as an alternative sense. Whenever the word “sight” is used in the article, it is always in quotation marks. Visually impaired people are referred to as VIPs. I email the author; one set of quotation marks goes; VIP stays. In my commentary on Facebook, I acknowledge that this article wasn’t written for blind people, let alone transabled, sighted-identified ones.
I used to love rejecting and deconstructing everything. Now, I just feel like one of the three little pigs, trying to build a movement out of negations.
Saturday, July 5: Knowing that it’s a terrible idea because we’re on the way to the bus station and I hate getting into a fight when I’m about to leave, I tell my mom that I’m going to take a visual art class while attending grad school this fall. I’d find a sighted artist to collaborate with, and though I wouldn’t be dishonest about my blindness, the collaboration would be a sort of momentary passing, or more like the equivalent of drag.
“That sounds like a cool idea,” my mom says, “but you need to connect it to disability studies. Otherwise, it would just be an ordinary collaboration.”
“An ordinary collaboration.” I love the sound of that. Why is ordinariness such a terrible state to aspire to?
Monday, July 7: My friend Barb, who used to be a graphic designer, has offered to collaborate with me on a photographic piece. “So you can have a portfolio for school,” she says. (I am excited and anxious at the same time. Does Barb know what she is signing up for? Do I want a collaborator, or a human prosthesis?)
We’re only in the early planning stages, but I’ve decided I want to create a series of photographs that show how I construct visual images with two retinas who work really hard but basically suck at what they do, a smattering of light perception, a hefty dose of synesthesia, and a cocky brain that keeps on feeding me visual input I don’t understand. It’s ironic that even when given the opportunity to use a visual medium, I’m still telling a story about blindness. (Derrida says that the more we try to avoid repetition, the tighter it grips us.)
I hope my art will be about more than blindness. These photos will be my coming-out story, an initiation ceremony of sorts, but I know that few people will interpret them that way. They’re much more likely to gush about how eye-opening my work is, how it taught them a different form of seeing. “That’s art,” Barb says. “You can’t control how it’s perceived. You’re always going to get condescension, and responses that don’t fit.” I’d like to believe that Barb is right, that Transability doesn’t make my battle more arduous than that of any other artist.
Wednesday, July 9: Some blind photographers, like Alex DeJong, inhabit “a dark space there, that only seems empty, but where everything is potential. A space of only becoming, everything flow, nothing fixed, all relative, a travel through time.”
Alex’s viewpoint is complicated and contradictory. In 2008, he created an art exhibition called “Longing for Sight,” which was a direct quotation from one of my essays, “In Search of the Ordinary.” But in another blog entry, written after he completed a spiritual quest, he said, “Now I both care intensely about image making and don’t care at all.”
Why do I lack Alex’s ability to “not care,” to “release the visual?” The biggest difference between Alex and I is that he lost his sight later in life, while I have been blind since birth. But I don’t think that’s the answer.
I tend to be pretty hard on myself sometimes. If other blind people can fill in the place where vision should be with their other senses, why can’t I?
But this is not where I am in the sequence of my story.
Maybe once I transition into sightedness, and sight loses its novelty, I will have a richer understanding of Alex’s point of view. Maybe I will always be a deeply visual person, perhaps to the detriment of other ways of perceiving. But for now, all I can do is value his complexity, the way he valued mine, appreciating both the resonance and the discord between us.
