• Disclosure and Fascination

    When you carry a white cane, a very visible marker of disability, you receive a lot of free information about other people’s lives, especially their medical history. Whether you believe that the white cane signifies impairment or independence, its presence is hard to ignore. Sometimes, it elicits a troublesome graveyard silence from onlookers – which is mildly irritating because I rely primarily on auditory cues to navigate my environment. Usually, however, the cane promotes a spontaneous socialization within its vicinity.

    When walking with the white cane, perfect strangers have stopped to ask me all of the following (and more):

    • “Excuse me, are you blind?”
    • “So if you’re blind, what are your dreams like?”
    • “Do you have fainting spells? Is that why you carry a cane?”
    • “So…can you tell me why there’s braille on drive-up ATMs?”
    • “Are you going to get a dog? You should get a dog.”
    • “Do you read braille? *pointing to sign for women’s restroom* What does this say?”
    • “Do you know Stan? He’s blind too. We were friends twelve years ago.” [Here, I am tempted to reply, “Stan? Of course! I’ve seen him at the meetings!” To date, I have been able to restrain myself.]

    At times, the cane moves people to tell you things or offer advice, rather than asking questions. This is usually because you’re waiting for someone or you’ve stopped to check your phone. At any rate, you’re stationary – which means strangers can approach and offer more in-depth conversation. Here’s where the extra (unsolicited) medical information comes in.

    • “My grandmother was blind too.”
    • “If you want to know when to cross the street, you can wait six seconds after the light turns green and go ahead. I used to be a crossing guard, so I know.”
    • “There is a blind guy at our church! He reads braille. He has a braille Bible and he brings it every Sunday. And he just…reads it!”
    • “Don’t worry, I run into walls all the time and I can see!”
    • “Without my contacts, I’m like practically blind.”
    • “For a blind person, you dress really well! I would never have known you were blind…”

    I know that things often fall out of people’s mouths before they realize what they’re saying or how it sounds. Most of the time, these awkward, clunky statements are a person’s way into the conversation – as if they want to say, “Hey, I’d like to know more about you and your disability” but instead, they see a cane and blurt out the first association they can think of.

    The cane initiates a lot of dialogue, provided that people understand what it indicates (If you guessed fainting spells, you don’t get the prize money this time!). The cane does a lot of the talking for me. It’s a shortcut for disclosure; when using it, I rarely have to kickstart the explanation of my vision.

    In one case, I was sitting in a theatre, the cane folded at my feet. The guy in front of me turned around and said, “What are those on the floor – numchucks?” I replied, “No, that’s my cane – it folds up. I’m legally blind.” He responded, “Oh. That sucks,” and I answered, “Not really.”

    Another time, I was standing at the service desk in a crowded bookstore, inquiring after a rare title. The clerk was extremely helpful and offered to walk me to the shelf where I could find what i was looking for. She came around the corner of the desk and I stepped away from it, my cane out. When she saw me, she said,  “Oh!”

    I cheerfully replied, “Surprise!” and she quickly recovered from her initial shock. She extended her elbow to me, offered to carry the stack of books I was holding, and complimented the flower in my hair. I concluded correctly that she had not been able to see my cane from her side of the desk.

    I think that the cane’s presence makes people more comfortable discussing other disabilities around me. A cashier tells me about her autistic child; a colleague discusses her mother’s failing vision. In these cases, the cane represents disability as a canopy under which we can all relate.

    Recently, I was talking to several people at a party – my cane folded and stashed in my purse – when one of the parents happened to mention that his son had Asperger’s syndrome. After an awkward pause, he quickly added, “But he is high-functioning. The doc says he has a 190 IQ!” Nodding, I said, “Oh really?” As I was fighting back curiosity, I noticed that the rest of the table had gone very quiet. I was not uncomfortable, but I could tell that a sense of unease had settled over the table. I can’t decide if the father or his audience was feeling the majority of the discomfort.

    When the cane prompts people to share their family’s and their own medical history with me, they don’t attempt to minimize or verbally overcompensate for the disabilities they’re discussing. It is as though the cane is an emblem of safety – people who bring up their sons or daughters with autism don’t have to offer me a disclaimer. No one has to say, “My daughter has x but she is really good at y.” I imagine that the white cane is like a white flag, declaring a public acceptance of disabilities – even extending that acceptance to encompass other human quirks or frailties. (I am thinking of the bank teller who saw the cane and told me that she also ran into walls.)

    I wonder how my party conversation would have changed if I had been holding the cane or checking the time on my braille watch. Would the dad have felt the need to assert his child’s value (a high IQ) if he wasn’t distinguishing his kid as the only disabled person in a room of “normies”*?

    In an ideal world, we would not have to barter for acceptance by asserting our talents when we disclose our disabilities. In the same ideal world, people would not associate the word disability (and all the diagnoses that fall under it) with a life that is not a life, an existence of only suffering and failure. Clearly, we haven’t arrived at the ideal stage, but I am grateful that the cane, and other public markers of disability, opens a space in which we can discuss our humanity with frankness and fascination.

    *Cheeky term for nondisabled people

  • The Great Lettuce Deception…And Other Embarrassing Moments with Food

    At Anneke’s party, my new friend Marilyn and I have found two fortuitous seats on the sofa. Just a few inches in front of us, the coffee table bravely bears the weight of several platters of hors d’oeuvres – an intense cheese plate piled high with my favorite cranberry-studded Stilton, chips and guacamole, a bowl of gorgeous strawberries, and a plate of shrimp-and-corn fritters. More amazing food smells waft out of the kitchen as the oven warms its contents. When the entrees are ready, Anneke brings me a plate. To her credit, the food is admirably piled; it’s easy for me to tell where one food ends and another begins. I can’t identify the foods by sight, so I don’t know that the dark colored stuff is chicken and rice until I taste it. However, once I’ve taken a cursory trip around the plate with my fork, I can identify each food and remember its location – no small feat since I’m notoriously bad at geography.

    Making my way through the generous portion Anneke has doled out, I encounter potato salad, rosemary bread, some sort of hot cheesy dish with veggies, a garden salad, and the aforementioned chicken and rice. Each of these items disappears with surprising swiftness, until only the chicken and rice remains. I spear a piece of chicken with my fork and put it in my mouth.

    I discover belatedly (once the chicken is in my mouth) that this piece contains a large bone. I begin to conduct a series of awkward tongue maneuvers, trying to pry the meat away  and shuffle the bone to one side of my mouth. Eventually, I manage to do this, and I discreetly (I hope!) pull the bone out of my mouth and place it on the edge of my plate.

    Because I consider myself an enthusiastic foodie and adventurous cook, I am often surprised by the flavor of new foods. Because I have low vision, I am often surprised by food in a totally different way. Unexpected textures, unforeseen bones, and decorative lemon wedges have found their way to my mouth many times. I have often mistaken the leafy garnish on the side of the plate for a far-reaching component of the salad. Because I rarely think to use garnish, it doesn’t occur to me – during the spontaneous act of food identification – that other cooks employ it.

    Obviously these occasional embarrassments don’t keep me away from food for too long. When someone at the table spills a drink or salts their coffee by mistake, I am gratified in the levelness of the playing field.

    One food stands alone as the unequivocal nuisance.

    Lettuce.

    Don’t get me wrong – I enjoy salads, tacos, lettuce wraps – many things that use lettuce in all its incarnations. But lettuce is a giant pain because it foils the laws of physics that aid the nonvisual diner.

    When I lift a spoonful of soup, a forkful of rice, or a wedge of pita filled with hummus to my mouth, the act of lifting serves two purposes. Obviously, this action facilitates the food’s travel from its place on my plate. Also, the act of lifting the food in my hand allows me to weigh it and make judgements about the size of the bite I’m preparing to enjoy. Whether the imminent portion is handheld or borne on a piece of cutlery, I can estimate its size, density, and relative messiness.

    Lettuce defies these rules of physics! It dangles off the fork in irritating ways, and its lightness makes it impossible for me to judge the quantity I’m dealing with. Many times, I’ve taken what I thought was a small, modest bite of salad – only to discover, as the damp lettuce bats my cheek and brushes against my mouth, that I was deceived by the greens!  In these cases, I am forced to put the fork down, hurriedly dab at my dressing-speckled face with a napkin, and hope that no one has seen my slovenly descent into ineptitude.

    I try to counteract this lettuce deception by obsessively cutting my salads when they arrive. If someone sets a salad before me, I will attack it with vigor, hoping to shred all the offending green into manageable, bite-sized pieces. In this way, I hope to prevent the embarrassing bite of inestimable proportions, the splashing of dressing, the awkwardness that comes with having a bite halfway in your mouth before you realize it really won’t fit.

    A similar wildness comes with the eating of linguini (or any long pasta) in red sauce – not because I can’t tell how much I’ve got on my fork, but because the noodles like to swing about and send little red droplets everywhere.

    Perhaps this is why I love parties and their finger foods, sandwiches, purees, and other considerate foods – edibles that don’t fight back!

  • Empowerment

    She has appeared in previous blogs, wielding a bottle of Puffy Paint and wearing a determined expression. She has uttered such maxims as, “A clean house is a sign of a boring woman” and “Disappointment builds character.” She has encouraged me to try everything from sewing on buttons and making lemon meringue pie to painting pottery and firing a bow-and-arrow. Now, the only thing keeping me away from archery is the surprising shortage of ready onlookers.

    More recently, she has taught me that a strong woman knows her own weaknesses.  But the lesson that I remember most, the one that I can trace back to my earliest years, is this:

    “You can do anything. You just have to find your own way to do it.”

    My mother gave me the impression that there was no question of me leading a normal, fulfilling life – that I could accomplish whatever I set out to do with the same determination as anyone else. Without reserve, she gave me a constant supply of something, the value of which I would not understand until much later, when I met children whose parents didn’t give them such a generous measure. It was not just love, though my mother’s love is a powerful current – sometimes terrifying in its intensity. My mother gave – and continues to give – the most potent gift a parent can offer her child, belief.

    I’m sure others would argue with this assertion, telling my young, non-parent self that love is the most powerful gift you can give your child. Perhaps I’m splitting hairs here by saying that belief is separate from love, but I have known plenty of people who demonstrated great love for me without the assurance that they believed in my capabilities. For those who think that tenderness is enough, I can say only that I know what my mother’s belief has allowed me to do.

    Whether it’s because she calls herself my biggest fan or because she says that my singing brings her to tears – or because she has volunteered to be my agent and accompany me on all my book tours – she never ceases to remind me that she expects my best and understands my potential. She never expresses skepticism, never asks dubiously, “Well how are you going to manage that?” Instead, she starts formulating a plan, making suggestions, and asking me about the particulars of any goal I want to accomplish. When I tell her I want to pursue my doctorate, she says, “I can already see you teaching. I see you in front of your class. You’ll get it.”

    I cannot imagine what it would be like to grow up with parents who don’t believe in you. When I give talks to groups of disabled students and I hear them say, “You mean I can have a normal life? Get married? Have a job?” my heart breaks. I think about how often my parents have encouraged me – praised every report card, attended every performance of our middle school musicals, supported me through endless chorus concerts and academic banquets, and bragged about me to all their friends and colleagues. I try to imagine what it feels like to be a child whose parents don’t brag about her, don’t light up when someone asks, “What’s your daughter up to these days?” I can’t get into the mind of that child. I’ve never doubted that I deserve the same rights and dignity as any nondisabled person, because I never felt like a second-class citizen at home. And it is not as though these children are not loved; it’s not like they don’t receive tender care. But there’s something missing.

    The missing link is what my mother could teach them in a matter of minutes, what she has taught me across many years. It’s not always a pleasant lesson because it requires tough love. It means that she won’t give up on me, that she tells me when my effort isn’t good enough, when she knows I could do more. Her toughness, her resilience, her refusal to accept anything less than what I deserve and what I can achieve has given me an iron core, an inner knot of strength. I don’t pretend to understand it; I am just now learning its power and constancy. And I can’t see it, not in myself. I can only see it reflected in her.

    I love you, Mom. You have given me what every child deserves.

     

  • Blind Date

    Hello. My name is Emily and I will be your blind date for this evening. Don’t be alarmed. As I’m sure you could intuit from our previous conversations, I’m not a blind date in the traditional sense, and this venture we’re about to embark on isn’t what the sitcoms or glamor magazines would call a blind date either. But I am a blind date, and I’d like to help you understand what I mean.

    You see, this isn’t a traditional blind date because I am not likely to be dating anyone I’ve never met before. Hopefully (if I’m talking to the right person), you’re someone with whom I’ve had a few conversations. Maybe we met at work, in college, or at my favorite bookstore. Are you still there? Please let me know if you decide to leave the table for any reason, or else I’ll be talking to empty air without realizing it.

    Speaking of the table, I should mention that, since this is an ideal blind date you’re speaking with and an ideal blind date we’re on, you and I are sharing a candlelit table at my favorite Greek restaurant. The restaurant’s lighting is very dim, and the place is cozy, the smell of garlic pervading the air. All the staff have lovely Greek accents, and the most attentive server conscientiously rearranges my bread or salad plate when he places a new dish before me. Unlike most fancy, dimly-lit restaurants, this place does not have white tablecloths on each table, and that’s a blessed relief to me. Have you ever tried to find a clear water glass on a white table cloth? It’s probably not much of a struggle for you, but when you have low vision, it’s not a fun game to play. Especially after the third glass of pinot grigio.

    Are you ready to order? I’ve been here before so it doesn’t really matter that the print on the menu is too small. Anyway, if I have to consult the menu here, I’ll pull out my Ruby, which is a small video magnifier. You’ve probably seen me use it before, since we’re so well-acquainted. It even allows me to change the text to white lettering on a black background, which is so much easier for me to read.

    But look at me getting ahead of myself. Let’s go back to when you first picked me up…

    You arrive at my house promptly, which I greatly appreciate. I award points for punctuality. As someone who doesn’t drive, it can be frustrating to be waiting on your ride to show up. No doubt, you’ll offer me your arm to escort me down the front stairs. I appreciate this as well. Don’t be surprised if I don’t unfold my cane in my front yard. It feels so strange to use it there, in such a familiar place.

    We walk up to your car and, being courteous, you open the door for me. If you are kind enough to stand by the door and continue talking to me, it will be easy for me to find the vacant space where I should attempt to sit. However, if you open the door quietly and walk around to your own door, or if you open the door quietly and don’t say much, it is harder for me to estimate where my seat is. So I recommend a simple, ‘Here you go,” or “The door’s open,” if you’re not feeling garrulous.

    (I understand if my stunning appearance or captivating perfume moves you to silence. It happens.)

    Truthfully, I don’t object to opening doors for myself. It’s a good way for me to learn exactly where things are. Often, someone will hold a door for me, and then it is harder for me to find the space that I should be walking through. So if you feel like opening the door, just give me a verbal cue. And if you’re not the door-opening type, you can tap the handle of the door and I’ll find it.

    A similar rule applies to pulling out chairs for me. I know these actions are considered courteous, but honestly, if you pull out a chair for me, I no longer know where that chair is. If you want to display this kind of courtesy, I suggest that you take my hand and place it on the back of the chair that you have so considerately pulled away from the table. Otherwise, I am not likely to benefit from your gentlemanly behavior. (Insert a picture of me missing the chair and sprawling on the floor, laughing hysterically. Follow this image with us getting kicked out of this fine establishment and having to settle for fast food. It could still be a good date, but I’m in the mood for Greek food. So save this trick for next time.)

    Well our server has arrived and taken our order. You might be surprised by how friendly I am to servers. If you think I’m flirting too much or being exceptionally chatty, I assure you there’s a method to my madness. If I engage a server in conversation, he or she is less likely to direct questions about my order to you. I like to speak for myself, but, since you know me already, this should not surprise you.

    The meal is bound to be fantastic. I have chosen this place for a reason. I hope you are willing to split dessert with me, although, I warn you, I am not very good at sharing dessert – not because I don’t like to share, but because getting bites of cheesecake or pie onto my fork from a plate that is farther away, equidistant from both of us, proves more challenging to my hand-eye coordination. You could be a sweetie and push the plate closer to me. I promise I won’t return this kindness by eating more than my share of the cake.

    We’ve pretty much concluded the restaurant portion of the evening. Let’s move on for what you’ve planned after, a trip to the symphony. Where would the perfect date be without a trip to the symphony?

    If we’re walking downtown, the cracked sidewalks and uneven streets are going to play havoc with my cane. I’m just warning you – I might need you to slow your pace a bit.

    And the ushers are most likely going to ask YOU if I want a program. You have several options here.

    If you want the rest of the evening to go poorly, you answer for me. It doesn’t matter what you say. Answering for me without consulting me will effectively mar the date.

    If you want the rest of the evening to be pleasant, you can choose any of the following options. When the usher hands you a program but doesn’t give you one for me, you can say in a voice of theatrical surprise, “Oh Emily, he/she didn’t hand me a program for you. Would you like one?” This might make the usher blush and say, “Oh…I thought she couldn’t see…Here you go!” He/she will hurriedly shove a program into your hands and, seeing that we’ve found seats, he/she will then make a mad dash for the bathroom to sob with embarrassment. (This is the ideal scenario.)

    Alternatively, the usher will ask you, “Would she like a program?” to which you can respond, “I don’t know, why don’t you ask her?” or “I don’t know. Emily,  would you like a program?” Here, it’s important to help the usher realize his/her misstep – not directly engaging with me. Encouraging him/her to ask me directly, or asking me the question he/she should have asked, helps underscore the absurdity of asking someone else to intuit whether I’d like a program.

    And, since you know me so well, you know I want a program. We’re at the symphony, after all. Of course I want to be able to read the historical information and calendar of future events that the program includes.

    The third option features the usher directly asking me if I would like a program. This rarely occurs, so we don’t have to prepare for it. Suffice it to say, I’ll answer for myself.

    After the symphony, perhaps we can go for coffee. Or a nice walk. Anything that will allow us more time to continue our fantastic conversation. Really, who wants this night to end?

  • Revamping the Blind Cafe

    Some years ago, I heard about the trend in “blind cafés,” places where customers pay for the experience of dining in the dark. Usually staffed with only blind employees, this lightless, sightless eating experience is supposed to a) simulate what blindness must be like, and b) generate empathy, understanding, and other feelings of goodwill and generosity toward the blind community. I take issue with this setup, especially since, as many blindies will tell you, the experience of blindness does not consist of a lifelong grope in the dark in search of necessary objects. In fact, blind people have usually developed a way of knowing what’s on their plate, where their water glasses are, and who’s serving them.

    However, blind people have yet to acquire the skills to intuit the menu at any given restaurant and I plan to touch on the issue of The Braille Menu (or lack thereof) in a future blog. For now, let’s just talk about the eating experience.

    I don’t know how it feels for sighted people to eat “in the dark,” but I would have no problem with it, especially if I’m eating food I’ve prepared for myself (in my fully accessible kitchen where tactile tape and puffy paint decorate all the appliances). If someone has prepared food for me, a dining companion of mine might use what I’ll call “the clock system” to tell me where certain foods are. He might say something like, “The lemon chicken is at twelve-o’clock, the broccoli is at three, the pork lo mein is at seven-o’clock, and the egg roll is at nine.”

    Why did I pick Chinese food for this example? Because whenever my family goes to our favorite Chinese restaurant and we order lemon chicken, my kind brother piles unnecessary decorative lemon slices on my plate. This all started the first time we ordered lemon chicken. I humbly asked Sammy, “Hey, could you not put lemon rinds on my plate? They are hard to see and I end up spearing one with my fork and biting into it.” His response?

    “You want MORE lemon slices? No problem!” So lemon slices found their way onto the edge of my plate, in the middle of my fried rice, and even into my water glass at the end of the evening. This is how he keeps me on my toes, always challenging me to practice my skills. No resting on my laurels here!

    I can’t complain, though, because Sammy is an excellent practitioner of the clock system. Whenever he sits next to me at dinner, he cheerfully takes me through a tour of my plate before I can even ask for assistance.

    But this entry is not just about actualities; it’s about fantasies.

    So here’s the deal. I propose that we, the ranks of the blind and visually impaired, commandeer all these blind cafés and dine-in-the-dark establishments and replace them with what I would like to call…The Embossed Eatery.

    I confess, this is not an original idea of mine. I am expanding on a piece of hearsay from my friend Karen, who told me that she read an article on Braille hamburger buns. Don’t believe me? Click here.

    But I think we can braille more than just hamburger buns, although the buns do provide a tempting platform for lots of suggestive messages. Maybe our eatery can have a “mature menu” so that Little Johnny or Little Sally don’t get a basket of sliders with “touch my buns” written in the seeds.

    (Maybe we could open an Adults Only franchise and call it the Dirty Dots Diner! Imagine what an interesting first date that would be!)

    For now, let’s just stick with the Embossed Eatery, or perhaps Emi’s Embossed Eatery. I bet you never even imagined all the ingredients we could muster in our brailling endeavor! Chocolate chips, blueberries, raisins, nuts, seeds, capers, and so many more—anything small and relatively round will do the trick! We could make cupcakes verbal with sprinkle messages, leave a literary trail in the pecan crust on a halibut, craft a love note with the green olives on a pizza, or stash a secret code in the feta crumbles on a Greek salad. The possibilities are truly endless!

    Like the blind café, I would keep the all-blind staff. And since we’re going for an experience of blindness, all braille menus! No print menus in sight, we’ll just have a board with blurry, low-contrast pictures so that our sighted customers will be forced into conversation with our blind cashiers, servers, and cooks.

    Perhaps the Eatery can even take curious customers on a tour of the totally accessible kitchen, complete with braille appliances.

    Maybe the Eatery could offer a selection of pre-wrapped items: chocolate-dipped Oreos with a sweet sprinkle saying, brailled candy hearts, muffins with a cheery Good Morning in blueberries, or pre-made sandwiches who announce their contents in caraway seeds along the crust. Perhaps takeaway items like these will become the hottest trend among blind sweethearts, eager to give their loved one food that really says something.

    If food is an expression of love, then brailled food could be an expression of so much more!

  • In the Care of a Chorus

    At 6:45 on Tuesday night, Sherry and I enter the rehearsal space. We are among the first to arrive. We thread our way through the round tables toward the front of the room and deposit our bags. Internally, I’m bouncing with excitement. After six long years of absence, I finally get to sing with these ladies again! Freshly graduated from college, I now have the time to commit to three hours of singing every Tuesday night, plus the hours spent outside rehearsal learning new music.

    Several members of the chorus recognize me; they remember me from all those years ago. I can’t even imagine what kind of person I was back then. I remember I was eighteen, a senior in high school. My fellow singers ask me about family, career goals, and more generally – what I’ve been up to! I beam each time I say, “I just graduated with my Master’s in English,” and I tell them about my plans to work toward a Ph.D.. None of them seem surprised. Their confidence in me feels so natural, effortless.

    After a brief conversation with our director, during which she assures me that I don’t need to be voice-tested again, I learn that I’ll be singing the same part I sang before – baritone. In barbershop music, the baritone part is a quirky mid-range part; it’s the harmony that contains all the notes that make the chords complete. If you hear a bari singing her version of a popular barbershop tune, you probably won’t recognize the tune. It’s the ideal part for obsessive musical analysts and music theory nerds like me!

    The other three options are bass, lead, and tenor. If these names sound masculine, it’s because the female barbershop style is modeled on the male style. People singing lead often have the melody; they sing the version of the tune that you recognize. Basses have a very harmonious, melodious harmony as well. You wouldn’t recognize the tune, but you’d probably enjoy singing it. And the tenor part is harmonically similar to an alto part in an SATB (soprano, alto, tenor, bass) chorus, except that it’s placed in a higher octave. What I’m getting at is that these other three parts are pretty tuneful – not just notes jumping around. The bari part is sporadic, odd, a mess of notes hopping all over the staff. And it’s ridiculously fun to sing!

    Once it’s decided that I’ll be singing baritone again, Sherry finds me a place on the risers next to an experienced bari so that I can hear my part among the group. Unlike many SATB choruses, we don’t stand in sections. We stand in “mixed” position, which means that we’re randomly assembled. The leads aren’t with the leads; the tenors aren’t near the tenors. We’re a hodgepodge, which makes for a neat, balanced sound and a well-exercised ear.

    Our director places me on the right side of the risers, near Robin and Faye, two baris with great voices. After 30 minutes of aerobics and stretching, the chorus completes 30 minutes of rigorous vocal warmups. I remember many of the vocal exercises from before, but they’ve added some new ones—notably one where, after 5 seconds of breathing in, you try to sustain a mid-range note at the lowest possible volume for as long as you can. It’s more challenging than it sounds. Some ladies can hold the note for up to 65 seconds! I can only hold mine for 25-30, but I plan to practice every day to improve this time.

    After an hour of exercise and warmup, it’s 8pm and we’re ready to start singing repertoire. We begin with some pieces that I heard at their March concert, and I lean toward Faye and Robin to catch those elusive baritone notes. The ladies have this music memorized, and our director coaches us on feelings, facial expressions, and breath. So much of singing is about your mental state and the state of your whole body; it’s an activity that far exceeds the voice alone.

    We break into sections and conduct a short rehearsal. Robin offers me her arm and we trot off with the other baritones to rehearse two relatively new tunes. I don’t have the sheet music for these, so I just listen and try to sing along. I am amazed at how quickly I get a feel for where the harmony is headed! It’s all coming back to me, I think. Like riding a bicycle. Except I’ve never ridden a bicycle.

    When all four sections rendezvous on the risers, we rehearse the tunes we’ve been working on. I’m delighted that I’ve learned most of one already. This harmonic intuition helps me feel that I’m right where I need to be, singing with the right people. When we first step up onto the risers, we’re still in our respective sections, four disparate little groups each singing their own part. Then our director asks us to assume our usual positions and I have to slide to the right. As we reconfigure ourselves, someone asks, “Who’s in charge of Emily?”

    Quickly, another singer responds, “Robin and Faye are helping her,” and kind hands grip my shoulders, guiding me to the right spot. Later, I’m guided to a new place on the risers in the same manner, and I find myself standing beside Sarah, whose rich bass voice is easy for me to identify. She reaches for my hand and squeezes it, saying, “I’m so happy you’re singing with us again.”

    Only after rehearsal has ended and I’m sitting in my room, checking email and preparing for bed, do I reflect on the question Who’s in charge of Emily. This is the kind of question that would irk the hell out of most disability rights activists. “In charge of Emily” – as if I need someone to be “in charge” of me, as if I can’t go through my life independently without assistance! The nerve!

    However, the question did not irk me at the time, and it doesn’t irk me now. There was something so natural, so fitting, about it.

    I think this is because being a member of a chorus isn’t about proving your independence. Yes, you have to know your part and hold your melody despite the harmonies around you, but you are never meant to stand alone. A chorus holds you aloft, melodically; each voice carries another voice. So as someone is “in charge” of me, I may be in charge of several others, carrying members I never even realized I was carrying. Standing in mixed position emphasizes the feeling that my voice helps innumerable, unknowable others. I do not just strengthen the baritone section. My voice provides the musical context against which other voices assert themselves. I know this, not from an inflated musical ego, but from hearing what my voice does for others in the way their voices help me. The voices surrounding me aurally reflect my own efforts and accomplishments as a singer. I hear myself in them, and, because of the context of their notes, I understand where I am.

    I think that understanding choral life provides a powerful framework for understanding life beyond the musical space. I don’t believe any of us are meant to travel alone and carry all of our own luggage. Someone should help pull your voice into the chord, guide you to your proper place among the group. And while one hand pulls you into the tribe, offers you your music, or adjusts your posture, your hands are outstretched to pass on the loving attention.

    I think this is what drives the production of music. A chorus is nothing more than a group of people, lovingly attending to one another and bringing all their skills to bear on a common goal.

    *This entry was published in the July 2012 edition of The Pitch Pipe, the Sweet Adelines International magazine.

  • Commencement: Sometimes a cane takes you places beyond your imagining.

    It’s a big day. Graduation. The sky is blue, the geese are honking, and the sun is shining — almost entirely on me, I think, because I can feel its heat, intensified by my black robes. They work as effective solar panels as Adrianna, my good friend and long-time sighted guide, and I walk toward the back entrance of the arena. Once inside, we’re directed to a series of tables crowded by black and blue robed graduates. We collect a card that displays my name and “Master of Arts,” which Adrianna waves before us like some fairy tale talisman whenever we get disoriented in the crowd.

    Eventually, we find ourselves in a long hallway populated exclusively by black-robed graduates. Everywhere, people are adjusting their regalia and clamoring for safety pins. The “hood” seems to be causing the most trouble, probably because it is not really a hood. It’s more of a drape, or a cape, that lays across the shoulders and flows down the back, showing off the university’s blue and silver. Wearing it properly (and I know I’ve got it properly on now, because a few kind classmates helped me), I feel like an academic superhero!

    But, as I said, I’ve got my hood and cap situated now, and the black 2012 tassel bats at my cheek every time I laugh or nod. Fortunately, the tassel is hanging before my bad eye, so it doesn’t become a visual hindrance. I feel rather stellar, once all the regalia is in place. I’m chatting with Adrianna and classmates, when a professor approaches.

    “You must be Emily.”

    “That’s me.”

    She introduces herself. “You’re up front with me, dear. I’ll come get you when it’s time.”

    I have two questions at this point: 1) How did she know who I was? 2) Why am I being placed at the front of the line? And the answer to both of these is the same. The Cane.

    Moments later, I am standing at the front of the line of M.A. graduates and it dawns on me. I will be the first graduate to enter the arena. Adrianna realizes this, and we babble with nervous excitement. We can do this. She has guided me hundreds of times before. We will do this.

    The professor gives the signal and we enter the arena to the sounds of a surprisingly crisp recording. Immediately, I become aware of the light and all the people. The next thing I notice is my cane’s sluggish progress across the ground before me. It keeps getting caught on some kind of tarp they’ve laid to protect the arena floor. So I cling to Adrianna’s elbow with more force than usual, taking care to pick my cane up instead of letting it sweep the ground.

    As we settle into a walking rhythm, I feel myself begin to beam. Once we’ve established the pace and gotten used to the environment, I feel confident, and Adrianna does as well.

    After a series of lackluster speeches, it is time for the conferring of degrees. Again, I am first up. Adrianna stands and offers me her arm and we follow the professor’s cues. We exit our row and walk forward across what feels like an infinite stretch of tarp-covered floor. I am used to this floor now, and the cane, happily situated in my hand, glides easily.

    As we prepare to cross the stage, two friends of mine call to me in stage whispers. I turn a beaming face to them. I realize that, again, the white cane makes it easy for people to spot me. The dean calls my name and I am the first student to ascend the ramp and cross the stage.

    This moment holds for me an unforeseen magic. The rush of excitement and delight I feel in walking up to the stage and across it is totally unexpected. I know that my name is barely audible because of the crowd’s enthusiasm. I know that the diploma case they hand me contains a form letter of congratulations and not my degree.

    The delight comes from the feel of the cane in my hand as I walk, the press of the master’s robes and hood swishing against me, the tassel insistently tapping the left lens of my glasses. What makes this moment exciting is the white cane.

    The white cane is part of my regalia. I feel honored and privileged because I get to bear it down the aisle and across the stage. I feel delighted that the first student to process in carries the cane. I wonder how many people notice it. I wonder how visible it is for others, how many recognize it for what it is.

    I smile to think that it must stand out so well against the black of my gown.

  • Accidental Affability

    It is a beautiful day to be outside. With bright sunlight throwing the path before me into high contrast and a cool breeze threatening to yank the cane out of my hand as I walk, it’s the kind of day I revel in, a day where my concentration is wrenched from cautious mobility by a thousand pleasant sensory impressions, all warring for my attention. Luckily I am holding Kyle’s arm as we make our way across the deserted campus in search of coffee. A lone skateboarder hurtles past, made present by the rough grinding of his wheels on the pavement and the swoosh of air he displaces.

    We pass under the large overhang that alerts me to the proximity of the campus Starbucks. Along with the warm siren smell of slightly burnt coffee, this drastic change in light is the most prominent marker of our location.  Kyle and I enter Starbucks, and suddenly, we know why campus seems empty. Everyone is congregating in here. We take our places in the relatively short line and wait to place our order.

    The girl standing in front of me orders her drink and the barista shouts to her colleagues behind the counter. Next, she asks me, “What can I get you?”

    “Hi, I’ll have a tall caramel macchiato please.”

    “Hot or cold.”

    “Hot!”

    I hear her scribble something on a cup and she disappears behind the pastry case. I step up to the cash register and repeat my order to the cashier. She turns to the other cashier, a girl who apparently knows me by name, and asks about the price. The other cashier, whose voice is more equipped for the noisy setting, replies, “Give her this price, because this is my girl!” I grin.

    The loud cashier, not the one assisting me, then says cheerily, “How are you doing today?” and I respond, “I’m GREAT, how are you?” I hear a barely-stifled gasp from behind me, followed by a chuckle. Kyle is trying desperately not to laugh. The girl who is standing to my left, in front of the loud cashier, mumbles, “Fine,” and hands over her money. I belatedly realize that this question was not intended for me. The loud cashier awkwardly stumbles through something like, “Oh well…I should’ve asked you anyway! Glad you’re great!”

    By this point, my transaction is complete and my face is crimson. I hastily shove my wallet into my purse, grab Kyle’s arm, and head around the various obstacles (baskets and shelves of merchandise) to pick up my drink.

    The awkwardness and embarrassment give way to an overpowering series of laughs. Kyle’s, no longer trying to be discreet, and mine, which has never been able to call itself quiet, fill the echoing space. A different barista calls out my name and my order and, still laughing, I slip my red crocheted coffee sleeve around the small white cup.

    I am featured in an abundance of stories like this one. Sometimes, there is simply no way to tell whether someone is talking to me or to some other person, standing just out of sight. In cases like these, I can’t help myself. I assume they are talking to me and I deliver an ebullient reply. I’ve offered my order to the wrong clerk, thanked someone for a compliment that was not intended for me, and called a sincere “you too!” to someone who was wishing a good day on another person entirely. But since I’d rather respond than not, I think of these interactions as fallout courtesies – a little bit of good energy dispersing to recipients unknown. And it’s always a surprise for them, since they weren’t even speaking to me, so who wouldn’t love that?

    The alternative, of course, is not speaking at all. Keeping totally silent until the person addressing me (if I am their intended addressee) says pointedly, “Next!” or “The girl with the red glasses!” or even more embarrassingly, “Emily!”

    Then there’s the happy medium, “Are you talking to me?” I’ve been deploying this one a lot lately, especially in situations where the barista-cashier-clerk-server doesn’t know me personally. It works very well, unless they respond with a disdainful, “No” (shorthand for “I couldn’t be bothered”). Then a little part of me deflates and I think, “Well I wouldn’t want to have a conversation with someone so unpleasant anyway!”

    Needless to say, these interactions make me extremely appreciative of the social situations where the person knows me by name! Just the other day, a professor of mine called after me in the hallway, and I spun around. It was so satisfying to know that I was the only Emily in that hallway and that the interaction was intended for me!

    But not every interaction can be that way. So I’ve resigned myself to handing out a lot more cheery nuggets of socialization than were ever handed to me. And laughing a lot when my response, delivered to someone who wasn’t expecting it, causes them to freeze up in shame, terror, or confusion.

  • Clean Up Your Act: Household Chores and Low Vision

    If you were to ask my mother to name one of the happiest days of her life so far, she might tell you, “The day I got married,” “The day my son got married,” or maybe, “The day my daughter got married.” (In my fantasies, she smiles brightly, dabs at her eyes, and replies, “The day you were born.” And then she leans in and whispers, “You’re my favorite. Don’t tell the others.”)

    While all of these answers are appealing and each contains a profound amount of truth, I suspect she might be fibbing just a little.

    I suspect that she might acknowledge as a contender the day she attended a seminar on teaching independent living skills to the blind. She came home, armed with a handful of new ideas and a sturdy container of Puffy Paint and set to work making all the household appliances accessible to me. And I waved a sad goodbye to my chore-free childhood.

    For those of you unacquainted with the magic of Puffy Paint, it is a thick paint that dries and leaves a three-dimensional, tactile (puffy) impression. It is often used to decorate T-shirts, tote bags, and other frivolous items, unrelated to housework.

    But Mom employed the Puffy Paint in all sorts of unwelcome places – squirting little dots around the dials of the washer and dryer, marking the buttons on the dishwasher, and labeling the gradations on the oven knobs. And as if that wasn’t enough, she then proceeded to teach me how to use each of these devices, all the while saying cheerily, “Just think, I am teaching you independent living skills! People pay for this kind of instruction! Later, when you’re living on your own, you’ll be glad you had a dedicated mom who taught you all this!”

    Once I had memorized every dial in the house and learned the ins and outs of washing laundry or dishes, we moved on to vacuuming. Here I must confess, I have NEVER liked the vacuum. We have always had an uneasy relationship, because the  vacuum produces a hideous, loud whine that I do not enjoy. But I had to get over this initial distaste and learn that vacuuming, just like most of the other chores, was something that did not require good vision. Mom taught me that the art to vacuuming was to cover the floor in a systematic pattern. Once she threatened to pour baby powder over an entire carpet to drive the skill home in a visual way, but we never had to employ that extreme tactic. I just started at a corner of the room and continued.

    The principle of using a pattern rather than depending on one’s eyes carried over to dusting, mopping, and even scrubbing a toilet. The motion was what mattered; once you learned how to scrub a surface, it didn’t matter that you couldn’t see it.

    This is not to say that I received an unfair share of chores, merely that I was taught to “do my part.” In a house with 6 people (2 parents and 4 children), we all had our assigned tasks. There was only one chore from which I was readily exempted.

    Six people of varying ages and and at varying stages of life meant a lot of socks. A lot. Once clean, socks of all sizes, colors, and fabrics – argyle, silk, dress socks, grayish white socks with the occasional hole – all ended up in The Sock Basket, a worn out laundry basket that sat in a back corner of the house. No one ever wanted the duty of trying to match all those socks. This was such a loathsome chore that Mom assigned it as punishment if one of us got in trouble!

    I don’t know what possessed me, but one day I volunteered to match socks. Maybe it was the mellow atmosphere of the room or the hours of dreamy contemplation the chore afforded. Maybe it was the tactile joy of handling all the different fabrics, freshly laundered and smelling like detergent. Somehow, the chore appealed to me, and Mom readily sent me off to match socks. So I sat for hours by the bin, happily pairing socks together.

    It was not discovered until much later that I had no actual criteria for helping socks find their mates. If a pair felt good together, they went together. I believed in encouraging all sock alliances – argyle and silk, fuzzy and dressy, blue and black. All socks were created equal in my expert young opinion.

    When this discovery was made, I finally received the satisfaction of being banned from a household duty.

  • On the Floor: Blindness & Ballroom Dancing

    Dance lessons always begin the same way. I enter the room, walking confidently with my cane and possibly holding the arm of a girlfriend, and we laughingly find our way to a chair or bench, depending on the room’s amenities. We take off our everyday shoes and strap ourselves into Dancing Shoes –  high heels with very secure ankle straps. Our dancing instructors tell us that the heels help you move your hips, especially for the Latin (or rhythm) dances. If you’re a real dancing pro, your heels will have suede on the soles so that you can glide across the smooth dance floor with ease. I’m not that advanced yet, and frankly, I don’t want to slip around more than I have to. So I always pack a sturdy pair of black or silver high heels and fasten the secure ankle strap as tightly as I can bear.

    Once the shoes are on, I most assuredly take my gal pal’s arm and we toddle over to the dance floor. Here’s where I am glad I brought a female friend, as a dance instructor will usually shepherd the guys to one side of the floor and the girls to the other. My friend will be able to give me helpful tips that supplement the teacher’s verbal instructions. So much of ballroom dancing instruction is delightfully verbal – “Slow, slow, quick quick…ladies, you start with a back step on the right foot and remember to stay in frame!” –  but there are occasional moments when the verbiage leaves me wanting more. For example, when finessing a graceful turn, I need either a hands-on demonstration with a capable partner or the descriptive whispering of my adjacent companion.

    Luckily when I go dancing, I don’t participate in the preliminary lesson to learn the steps. I was fortunate to be an active member of the ballroom dancing club at UNF during its short duration and I’ve learned the basic steps for most of the dances. I participate in the lesson so that those who see me walk in with my white cane will know I can actually dance. The lesson usually begins with the men and women learning across the floor from one another, but at some point, we all partner up and form a huge circle. As the instructor guides you through a small routine, you’ll move around the circle, trying the moves you’ve learned with a new partner every few minutes. This is the time when I get to show the guys that I’m a capable dancer. Bottom line: I know the moves so please, when the lights dim, Ask Me To Dance!

    However, since the emblem of my blindness is now neatly folded and tucked into a corner with my purse and everyday shoes, this is also the time when I must try to subtly impart to them my visual impairment. It’s very unfortunate to have a partner lead you onto the dance floor, NOT knowing that you have low vision, because he might try something called a “free spin” – where he lets go of you and you both twirl away from one another – and, when you turn dizzily back around to face where you think he is and you’re wobbling a bit in your high high heels, he’ll wonder why you didn’t execute the move with perfect finesse. It’s much easier for a partner to know ahead of time that free spins are a dangerous, if not ungainly, choice.

    But how do you impart this information in the 10 seconds of introduction you share while he’s offering you his hand and saying, “Would you like to dance?” It’s hard to reply, “Oh sure, but hey, I don’t see well so don’t let go of me!” You don’t want him to shake his head and walk away or to tense up and be uncomfortable. So what you do is…you get in the circle in the beginning, and you hope that the guys in the room notice how your first partner guides you across the short distance to the next partner. If they notice that this particular girl needs a little assistance traveling from partner to partner, maybe, just maybe, they’ll connect that with her glasses and the cane she came in with.

    Even if they don’t make The Big Connection, if my potential partners see me in the circle and one or two of them helps me establish the precedent of guiding me around a bit, I can work with that. It’s enough for them to know I need to maintain the constant contact – no free spins please! – and that I’d appreciate it if, when our dance is done, they guide me back to my original seat.

    This is why it’s helpful for me to have friends on the men’s side as well. I’m very comfortable when I dance with people I already know, because they’re familiar with my abilities. And what’s wonderful about ballroom dancing is that visual observers can learn so quickly.

    So…back to the actual dancing. Let’s pick my favorite – swing! I was once dancing swing with a friend of mine so fast that his glasses flew off! Talk about a disaster! Neither of us had a clue where they were, and everyone was dancing so fast around us, I’m surprised the glasses were unbroken when we found them.

    Swing is the best! It’s fast, energetic, a real outlet for passion. I hear swing music and I immediately start tapping my feet and choreographing in my head. One of my favorite moves, The Pretzel, involves a series of exhilarating steps where your arms are flying, hands joined, over your head and your partner’s. It ends in something called The Sweetheart, where your partner’s hands are crossed in front of you, gripping yours, and it’s the perfect setup for a big, dramatic dip.

    Provided that my partner is skilled and courteous (well-acquainted with my visual limitations and not spinning me 7 times in a row), ballroom dancing is a space of unique freedom and trust. I never take my cane on the floor and I give myself entirely into the embrace of my partner – which means it’s his job to make sure we don’t go careening into anyone. The trust I place in my partner is so great that I don’t even think about the possibility of crashing into someone else while I’m dancing.

    Whether it’s swing, fox trot, or hustle, the experience of dancing with a partner is a rewarding collaborative effort. It is incredible to think that, on the floor, you take all the cues you’ll ever need from the press of someone’s fingers, wrapped around your own. You don’t have to meet their eyes or worry about facial expressions that you can’t perceive – your whole world comes to you through the right hand, clasped in his left, your left hand, resting on his upper arm, and his right hand, pressed against your left shoulder blade. Every turn, dip, abrupt change in direction, or surprising new move comes to you by some tactile signal at one of these three points of access.

    I find it incredible that you can get to know the partner and the dance so well that the slightest pressure against your back or a minute angling of the wrist lets you predict what’s coming next. Yet, a talented partner can still surprise you by leading you into a move you haven’t even learned or a turn you didn’t expect. (An untalented partner can surprise you as well, but it’s not as pleasant to blog about.)

  • Happy Easter, Boys and Girls!

    Springtime. Adorable baby chicks. Pastel colors everywhere. The punchy smell of vinegar as Mom prepares the colors for dying eggs. A line of little coffee cups hold the little colored tabs fizzing away. I claim the red one. And the purple. A beribboned Easter dress in shades of pastel pink or lavender, maybe even yellow. Frilly socks. Easter bonnets. Eggs. Eggs everywhere. Egg hunts. Candy! And that dreaded of all seasonal substances, the infamous, the unconquerable Easter Grass, the sprigs of which litter the house for months, even years after the Easter season has passed.

    As a child growing up in a Catholic household, I learned that religious holidays were a big deal, huge festivities celebrated with tons of family and good food. Christmas has always been my favorite, namely because it is the only holiday that comes with months and months of preparatory singing. When I was in high school, our chorus would begin singing the Christmas music in August, in order to prepare an audition tape for the Candlelight Carols festivities at Epcot in December. So from August through the Epiphany (that’s January 6th for the non-religious), Christmas and its attendant carols were a huge part of my life! As a woman who loves to sing, how could I not adore this holiday?

    Add to that my penchant for highly contrasting colors and Christmas is a recipe for blindie bliss! It provides a season of bright red, which has always been the easiest color for me to see, and dark green (another easy contender), and the trimmings, in glaring silver or gold, stand out quite nicely. Let’s not forget the crisp white of snow, which we Floridians only encounter in synthetic form, or the faux-fur that trims all Santa’s cheery apparel. Even candy canes are blindie-friendly; they’re striped in contrasting color, and hey, they’re canes!

    No wonder the ad agencies tout Christmas as a magical time. Between those tiny jingle bells that adorn so many decorations and the satisfying pointy scent of evergreens, it’s a blindie’s paradise! Maybe in the blind section of Heaven, where there are braille labels on all the keypads and scratch-and-sniff maps on each floor of every high-rise, it is Christmas every day…

    So, what about Easter?

    Well for one thing, those damn pastel colors are a recipe for disaster! You can’t escape them! I’ve never been able to tell the difference between baby pink and marshmallow-chick yellow. Not even the M&Ms are safe! They’ve been painted in pastel too! This is why I always claimed the red, purple, and occasionally, orange from the egg-dying kit! It’s just not fair to make a little girl with low vision use the pale green, pale yellow, and robin’s egg blue to dye her eggs. I wouldn’t even be able to tell if my eggs were strongly colored!

    (Needless to say, my dyed eggs were always a bit dark and gothic – I’d leave an egg in the red dye for as long as I could before my siblings coveted the color. Deep red eggs! Now THAT’S Easter!)

    And let’s not forget the Easter Egg Hunts! Hide the indiscernible pastel-colored plastic eggs in the bright green grass and set the kids loose! Luckily, I have a kind family, and some considerate relative always followed me at a discreet distance and coughed meaningfully to direct me to an egg, cleverly concealed in a potted plant or tucked into the crack in the sidewalk. I can’t complain too much; my Easter baskets were always full.

    As far as holidays go, Easter does out-cute all the others. The bunnies and chicks that cluster in fuzzy profusion on the supermarket displays or crowd the shelves of the candy aisle are thoroughly adorable. Especially those baby chicks that peep when you hold them, now that’s cute! I can ignore that they are a hard-to-see yellow and just close my eyes, stroke their soft fluffy surface, and listen to the sweet mechanical chirping.

    Also, those hard-to-find eggs usually contained chocolate, which is VERY easy to see! So the commercial side of Easter is not wholly bad or off-putting.

    I’m just affronted by the pastel M&Ms. And I can’t blame Easter alone for that. They’ve become quite popular at baby showers, and other places where pastel colors are The Thing. Maybe I will order myself a supply of exclusively contrasting M&Ms!

    No, I think I can suffer through the pastel-flooded, low-contrast ambiance of springtime once a year. All the other holidays are kind to me in vibrant colors. If Easter’s pale washed-out tints didn’t frustrate my vision so, who knows how much I would truly appreciate the lush hues of Halloween and autumn or the bright primary brilliance of Christmas?

    Bring it on, Easter! I am ready for you!

    But don’t be surprised if all my eggs are red, purple, and possibly orange.

  • Three Turns

    I stand up, swinging the heavy bag over one shoulder, unfolding the six sections of the cane with their hearty, reassuring clicks. Mobility is a mess of sensations. “Can you make it?” — it’s the question on others’ lips, but they’re whispering compared to the voice in my head. “Can you make it?” Don’t be a hero. Reach for that elbow you love. It’s comfortable.

    If I can get outside my head and into the world, I realize—it’s only three turns. The cane slips forward, gliding scratchily along that nasty carpet, and I round the first corner. A moment of confusion as the bright lights of reception blur out the notable, the necessary features of the doorway. Take a minute to adjust.
    I  s l o w  m y  p a c e  And…they’re clear.

    Abrupt right turn. The first of three long lengths seems easy. I round a corner by a water fountain, a left turn — the sunlight shining through a glass door nearby is a beacon. Don’t turn there! The next length is darker, more sedate, but free of distractions, easy to travel, good for concentration. Right turn. And I get a rush! from seeing such familiarities. I start to recognize with my eyes that I’m where I should be. Intuitions aside, I can now track visually the path to my office. Veer right, follow the wall, pass the screaming panel of glass that throws sunlight at me. And another short, dark hallway until one door, two! That’s me. I can stop, reach for the keys, and unlock it.

    It’s not enough to be mobile. I must be a mobile mind.

    * This entry was featured in the Summer 2012 edition of the ILAB GAB, the quarterly newsletter released by Independent Living for Adult Blind in Jacksonville, FL.

  • “How does it feel?”: Exploring touch and texture

    A few years ago, my brother and I were doing a bit of grocery shopping, and, as we wandered through the produce section, he abruptly stopped the cart. Trying to suppress a mischievous laugh, he reached for something on a shelf and said, grinning, “Feel this!” When he put it into my hand, I immediately understood his mirth. What he handed me was a fist-sized fruit, whose relatively round shape was disrupted by small, pointy protrusions. I laughed too and he informed me that I was holding a Peruvian horned melon, a specimen separated from the conventionally smooth or modestly bumpy ranks of fruits by its hilarious strangeness. A fruit with horns! I had never touched anything like that before.

    I should mention that the grocery store is often a place where I was told, “Look, don’t touch!” – the supervising adult’s way of keeping a curious, tactilely-oriented child from pulling every item off the shelf. Now that I am an adult and can be trusted not to break things for the sake of understanding physics, I touch everything. Especially the fruit.

    But the most sublime textures, the ones in which I revel unequivocally, are not to be found at the grocery store. They’re found in a variety of places, and my encounters with them are often unexpected. After all, I can’t see them approaching.

    The textures I notice most are probably clothing-related. I walk with so many different sighted guides during the week and they all change their clothes relatively frequently, so I get to experience something new each time I reach for an elbow. Sometimes it’s bare skin (and I can tell whether the person uses a moisturizer or drinks enough water), and sometimes it’s the smooth supple pleasurable leather jacket. My friend Nick has a particularly nice leather jacket; it’s so thick that I can barely discern his elbow beneath it. But most of the time, in this hot Florida climate, it’s some light form of cotton, which is not at all unpleasant.

    If I’m lucky, it’s corduroy. Oh how I delight in corduroy! The kind with the tiny ribs, crammed close together, or the kind with the big, soft ribs spaced a quarter-inch apart. There’s something about corduroy that I just love.

    And then of course there are the scarves – smooth, soft cashmere or the rough, intricate weave of a crocheted scarf. I have 3 crocheted scarves that I particularly adore – two made for me by my mom’s good friend Suzanne and one from my dear friend Katie. The ones from Suzanne are soothingly soft; I can tell she picked the yarn especially for its texture. The one from Katie is a rougher yarn, more interesting than soothing to touch. She chose an intricate crochet pattern with tiny holes and plenty of features for my busy fingers to explore. And that business is in its own way very soothing to me.

    In the presence of these soft delightful textures, I am reduced to the nonverbal cooing of an infant. I love things that are soft and inviting, things you want to rub gently against your cheek.

    In his book, Busy Body: My Life with Tourette’s Syndrome, Nick van Bloss writes about his “Touretty” compulsion to touch certain textures, even textures that wouldn’t seem inviting – like a friend’s oily nose! I don’t usually feel drawn to explore oily noses, but I do experience a similar urge to touch things, especially if I can’t make visual sense of them. Or if a friend is wearing a vibrantly-colored shirt, I want to touch it to understand it better. Texture is such an important dimension of my perception.

    I don’t think I could choose a favorite texture, but there are a few contenders, delivered in no particular order.

    1. The smooth surface of a piano, especially the part that closes over the keys – I am ashamed that I don’t know what this part is called. Also, the keys. Piano keys can feel so different from instrument to instrument. I personally like the weathered smoothness of older keys, but I wouldn’t turn down a chance to brush the keys of a brand new baby grand.
    2. The gritty smoothness of my Macbook. Gritty smoothness? Yes. I can’t seem to articulate it another way. The aluminum of the outer casing isn’t silky smooth, but it is smooth. It still has that quality that sort of drags at your fingertips as you touch it. Unlike the little apple cutout on the Mac’s lid – which I love for its silky smoothness.
    3. Golden retrievers! My god. They’re incredible! I spoke at a meeting for the Foundation Fighting Blindness back in November and they had two guide dog puppies there. One was a lab, who was adorable in his own way, but the other was a big, lovey, fluffy golden. I had never petted a golden retriever before. I guess people who can see them know what they are getting into; they can behold that inviting fur and think, “It is going to be so soft and fluffy!” But I had no idea. And I am now forever changed. It was so soft…
    4. Corduroy.
    5. A new cane – but that’s an entry in and of itself.

    This list is by no means complete. For one thing, I’m talking here about the textures I feel with my hands. This doesn’t take into account the textures I feel anywhere else, the textures that brush my skin or the textures of food, or even the texture of the ground.

    In music, the word texture is used to denote the way that melodic lines are arranged within a piece. For example, a piece with polyphonic texture has several melodies of equal importance playing at the same time. Mood-related characteristics like bright, dark, or light refer to a piece’s timbre – its tone color. I run into problems when I start talking about the texture of music, because I mean something more akin to texture in our conventional sense. If a piece of music sounds gritty, smooth, thick, rigid, airy — what word can I use? To me, these are all tactile qualities; I’m describing how the music feels in a sense other than emotionality. But, as I said, the texture of music refers elsewhere. So I am now on the search for a new way to talk about the characteristics of music I’m describing.

  • The curing hymn

    After I graduate, I want to audition for a group that brings musicians and artists to hospitals, nursing homes, hospices, and similar facilities. The idea of singing as healing has always appealed to me, much more so than the thought of performing. I don’t feel the urge to be the center of attention onstage where I can’t really feel my audience. I prefer the intimate setting of a small room; I desire the closeness of a small audience whose reactions I can gauge.

    My friend Edie, who brought the group to my attention, happened to tell me that “Amazing Grace” is one of the most requested songs in hospitals. I have never done any hospital singing, but I can conjecture that people find this old, familiar, warm hymn comforting. Especially in our locality, its lyrics of Christian conversion and rebirth are words we all learned as children — grandmothers sang them, we heard them in church, and they are likely inscribed on some article – plaque, sympathy card, cross-stitch pattern – in our homes. Those among us who have sung or played our fair share of funerals know that “Amazing Grace” has a special place in the hearts of the grieving.

    Edie tells me about the technique of hospital singing and asks me what I will sing for my audition. She mentions a few other hospital favorites (“Danny Boy” and “How Great Thou Art”), songs which don’t have any particular significance for me. I start to think that, if I become a member of this group, I will certainly sing whatever patients request. I’m not there to judge their taste; I’m there to provide comfort, joy, peace. Healing. This is what I have always wanted to do with my voice and I cannot wait to do it.

    But for my audition, I shudder at the thought of singing “Amazing Grace” whose lyrics for me seem graceless. I distinctly remember learning about the hymn’s composition, sitting in a 5th grade Religion class at my Catholic grade school. I remember our teacher saying that the author of those lyrics was the captain of a slave ship whose powerful conversion led to their composition and content. God found him, saved him, poured the sweet sound of grace into his ears, and cured his blindness.

    “…was blind but now I see.”

    Even as a child, I had a problem wit this line. I never mentioned it to anyone because I was sure they would laugh at me and say I was being “too sensitive.” “It’s a metaphor, Emily,” said the mocking, pitying voices in this imagined conversation. “Don’t be so touchy.” Or the more religious version, “Well, Emily, it’s about more than just physical blindness. Maybe you need to get past your worldly sensitivities and understand that you too have your own spiritual blindspots.”

    But the newly-found disability activist in me rails against these imagined oppositions. The lyrics don’t talk about a man who was deaf and now can hear, who was lame and now walks, or who was cognitively impaired and now thinks clearly (although I suppose the earnest reader could say that he was “lost” and now “found” is the indicator of a mind on the wrong course). Instead, the first verse (and let’s not get ambitious here – who among us knows any verse better than the first?) talks about a man whose new spiritual beliefs give him a different way of looking at the world. He was “blind” but now he “sees” – God has, as He has done so many times before in our history, “opened his eyes” to a new reality.

    And maybe for the sighted among us who are used to a visual world that makes sense, an interpretation of their physical space that never shifts, wavers, or distorts, this is a powerful transformation.

    But I am used to a world of wobbling images, wavering lights, and constantly transforming objects. I have brushed against bushes before and said hastily, “Oh excuse me,” thinking I had grazed a person instead. I have gazed into the distance, blurred by too much sunlight (for almost any amount of sunlight is too much for my dilated pupils) and seen blurry objects take shape — what I thought were people turn out to be trash cans or signs or even columns. It all depends. It all shifts. I can’t even begin to articulate patterns, but I can say that my low vision constantly nourishes my poet’s imagination and keeps the shelves of my symbolic root cellar well stocked.

    “I was blind and now I see.” I can’t bring myself to sing this. Not for an audition, not for the time when I will choose the words to represent what I believe. If I have the chance to pick my signature hymn, the hymn that will cry to the world my unequivocal status as a singer and healer combined, the hymn that will express me, I cannot choose the curing words of “Amazing Grace.” I do not want the visual miracle they advocate—not because I stubbornly resist change and improvement, but because it invalidates my current perspective and the beautiful life that wakes me every morning. I find value in the vision that I am using now, the sight that lets me watch the large white letters marching across my black screen, the sight that falters in the bright sun and makes me revel in shade, the sight that makes me feel transported when I can actually glimpse the moon at night or the veins of a leaf. These are rare, visually-epiphanic moments for me, and they comprise some of the bright points of a constellation of joy that I live.

    I think I have found my hymn, the lyrics that express me and that validate my current perception. I have found the hymn that carries my golden light heavenward, the message that I would give in lieu of all others. If I had once chance to sing my beliefs to the world, this is the hymn I would choose. For me, it is a curing hymn, an anthem of preservation, delight, and timeless strength.

    “My life flows on in endless song;
    Above earth’s lamentation,
    I hear the sweet, tho’ far-off hymn
    That hails a new creation;

    Thro’ all the tumult and the strife
    I hear its’ music ringing;
    It finds an echo in my soul–
    How can I keep from singing?

    No storm can shake my inmost calm
    While to that rock I’m clinging;
    Since love is lord of heaven and earth,
    How can I keep from singing?

    I lift my eyes; the cloud grows thin;
    I see the blue above it;
    And day by day this pathway smooths,
    Since first I learned to love it;

    The peace of love makes fresh my heart,
    A song of hope is springing;
    All things are mine since truth I’ve found–
    How can I keep from singing?”

    *If you want to hear one of the particularly gorgeous settings of this hymn that inspired me, go to iTunes and find the version sung by the University of Utah Singers. I wanted to put it here, but I was unable to find it on YouTube.

  • Impossible autonomy

    Some days I feel like a substandard ecopoet. I have only walked the UNF Nature Trails twice in my six years’ experience on this campus. Yet each time has brought forth the same conclusions, thoughts that have been steeping awhile and now must be given a voice.

    The first occasion, according to the dark green diary I kept at the time, was on October 2, 2010. (I am relieved by my own meticulous journaling these past few years.) I walked the trails with Angel, and it was the first time I’d ever done so. I felt elated, ready to revel in the green quiet and the soft earthy breezes, ready to be transformed. Like Thoreau planting his beans at Walden, I was prepared to accept a series of transcendental epiphanies.

    And other than the beauties that surrounded me – the piercing clarion of the bird calls (birds I couldn’t name by the way since they only sounded in my perception), the soft, changing terrain underfoot, the idle cicadas by the water’s edge, the wind’s amorphous timbre as it stirred leaves of different sizes – other than these things, I found myself with one thought.

    My cane is utterly useless here.

    I had my cane gripped tightly in my left hand, while my right was lodged firmly in the crook of Angel’s arm. Because it was a warm October day in Florida, sweat started to loosen my grip on both items—and still I clung to the cane. I clung to it as it skittered futilely over roots, swung upward out of my hand, and caught along fallen branches. I clung to that long tube of intuitive material even as it distorted the ground beneath me. So why didn’t I fly about, trip along, stumble, tumble down into the soft uneven ground as the cane told me to?

    Because my right hand had a firm grip on reality. It curled around Angel’s arm, and so, as Angel lifted a foot to circumvent a troublesome root, the arm, capturing the movement of his body, responded, and my hand received the signal. Pick up your foot. And I did.

    With silent fluidity, the gestures continued to tell me what my terrain looked like, where to lift my feet, where to shuffle forward, when to stop abruptly. The cane continued to bob in my left hand with near exaggerated efforts – as if to say, “Look at me! I am still useful! Trust me!” But its responses in this place were so confusing and inaccurate, I finally stopped swinging it before me and just dragged it along.

    Perhaps to the sighted among my readers, this does not seem a very drastic gesture. How can I underscore the utter unconventionality of this abandonment of the cane? Maybe I could tell you that there are only 3 places I can think of where I don’t use a cane: 1) inside my house, 2) inside my apartment on campus, and 3) in my front yard. Everywhere else, that cane is in my hand, informing my reality. It’s my fifth limb and if, by some hellish chance, I forget to grab it, I feel as though I’ve had half my body surgically removed.

    So when I walked the woods 18 months ago and decided to ignore what my cane was telling me, I thought that surely this was a fluke, a rare occurrence, and a testament to my companion’s excellent ability to guide me. And this is all true.

    But I ventured into the trails again today, this time with Katie, and found that, as before, the cane was of no use. Again, all the information that helped me stay on my feet and move forward came to me through the movements of Katie’s body, through my sweaty grip on her smooth elbow. I noticed also that the woods had a sedative effect on my mind; the busy brain that would normally have been lamenting and correcting my misplaced feet had been muted. I glided along, feet feeling the roots, boardwalks, soft ground, cane bumping awkwardly against the steps I had not even traveled. At one point, the cane swung up and caught a step that I would not touch with my feet for several inches—that was disorienting. To feel the cane suspended in the air, alerting me to a future situation, made me think that in some ways, the cane in the woods is like a delirious time-traveler.

    What does it mean that my cane is unfit to travel these trails? I have never harbored any delusions that my cane and the natural world get along perfectly—when I return from my very infrequent trips to the beach, I have to shake the sand out of the cane’s segments before it will fold or unfold smoothly again. I know that it is not made for all climates. The cold weather makes it stiff and the segments difficult to separate.

    But the cane is a simultaneous symbol of disability and of autonomy. The cane and I make One Independent Blind Woman. The cane says, “I can travel where I want.”

    And the cane is utterly useless there, in the trails, where I feel such a prevailing peacefulness and delight. What can it mean that my cane won’t let me access this small piece of paradise?

    How can it be that a human guide is better than a cane? No! I refuse to accept that. It can’t be! It must be that the human offers me something different, not necessarily better. Just…different.

    Unless I was never meant to be autonomous in the garish, glossy, tourist-brochure kind of way. Maybe autonomy, which eludes me in this natural setting, is not something I even want.

Emily K. Michael

Emily K. Michael is a blind poet, musician, and writing instructor. She serves as the poetry editor for Wordgathering at Syracuse University. She is also a poetry mentor in AWP’s Writer to Writer program. Her work focuses on music, embodiment, teaching, and ecology. Emily is passionate about birds, medieval history, singing, and guide dogs.

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