Category Archives: Blindness

Bidding a Fond Farewell: a Tribute to Knight, 2002-2017

Dear Knight,
Whenever someone who hasn’t met you asks me to tell them a story about what you were like, I tell the story of the day we met. It was a hot, sticky, Long Island day in mid-July, the summer before my junior year of college, and I was about to embark on my greatest adult adventure to date: moving off-campus into an apartment with two of my best friends. Quick walks to class from my dorm to the main campus would now be replaced by arranging my own transportation. No more popping into the campus café for my customary tuna sandwich on the way home from class; now I had to walk across the street to the local Super-Target for my groceries. Increased independence meant increased mobility, and getting a guide dog seemed, to me, the blind equivalent of receiving a driver’s license. Not to mention, being a young woman with a disability, I saw a certain appeal in having the security of a big scary dog. As it turned out, our nearest neighbors were a group of boys whose major threat seemed to be smoking marijuana, playing beer-pong, and reciting drunken, impromptu poetry to us as we passed in the hall, and you were more afraid of them than they were of you, but that’s another story.

As soon as I completed summer classes, I boarded a plane to Smithtown, New York to spend four weeks at the Guide Dog Foundation, learning how to navigate the world with a furry, four-legged pair of eyes. After two days of introductory instruction on guide dog handling and dormitory rules, which included, among other things, no dogs on the bed, we were called into the lounge to receive our dogs’ names before returning to our rooms to wait for trainers to bring them to us so we could spend a few minutes bonding before our first walk. I remember very little about the wait time, other than wiping my sweaty palms on the white shorts that I really wished I hadn’t packed for the trip once I learned you were a black Lab. Eventually, a knock sounded at the door, a trainer entered, placed a leather leash in my hand, and backed out.
“So, what now?” I thought as I ran tentative fingers along your silky ears—ears that would soon listen to and put up with more than any human I’d ever known. For the first, but not the last time, you seemed to read my mind. Sensing my hesitation, you cocked your ears, put your head on one side and regarded me with mild curiosity. Then, without invitation, you leapt onto the bed, settled down in the center, rested your head on your front paws, and thumped your tail once as if to say, “Okay, I’m waiting. I’ve got a job to do here.” There was that rule about dogs on the bed, but apparently it didn’t apply to you. Rules were for anyone who didn’t know their way around the world; you did, and you wasted no time letting me know that.

At only 19 months old, you possessed the poise and wisdom of one who had seen, done, and learned much; you sized me up and decided you were smarter than I was, and you took it upon yourself to show me that whatever we did, wherever we went, we did it your way or not at all. Over the next four weeks of training, we butted heads a lot. One afternoon, we took 45 minutes to complete a route that should have only taken us 15, and probably would have if I’d listened to you and turned right at that corner instead of crossing the street. If you could talk, you’d insist that we didn’t actually get lost in the middle of Flushing; I got lost. You just went along with my stupidity to silently teach me a lesson. You did that a lot, and eventually, after countless wrong turns, a few floods of tears, and several scraped knees, I began to listen to your words of wisdom, spoken in the quiet, self-assured way you carried yourself in every situation. When I wanted to turn left and you knew we needed to turn right, you’d stand perfectly still and swish your tail against my thigh. “Trust me, I know what I’m doing,” you seemed to say.

We took a lot of walks during the years we spent together, traversing everything from college campuses to crowded airports. In your spare time, you chased lizards, rifled trash cans, discovered how to pry the lid off a container of dog treats, and insisted that however much room you had to yourself, the best place to sleep was on my feet. You loved wishbone chew toys, having your ears scratched, and licking babies’ fingers; you feared absolutely nothing—the single exception being inflatable snowmen, for reasons that none of us have ever satisfactorily understood. You graduated college with me, yawned your way through my Master’s degree, and when I embarked on my first semester of teaching, you were everyone’s favorite student. You even saw me through the first two years of earning a PhD before you decided you’d had more than enough school than any dog should have to endure.

It seemed fitting that the last journey we took together was the plane ride back to New York, to the very same spot where we first met. As the moment of separation approached, I wished, not for the first time, that God had seen fit to give dogs the capacity for speech. How was I going to explain to you that when I kissed your nose and said goodbye, it would be for the last time? I was returning to the Foundation to train with a second dog, and while I knew rationally that I would come to love your successor as much as I loved you, handing your leash off to my uncle, who’d generously offered you a retirement home with his family, felt like detaching a piece of my heart. When my uncle walked back out to the car to take you to his home—your new home—would you wonder where I was?

Even as, hours later, my lap and heart made room for a new friend, I wondered about you. Were you looking for me? Would you be happy? I stopped worrying when my uncle called to tell me that the first thing you did when you arrived at your new home was jump on the couch and knock over the Emmy Award statuette my uncle had received for his graphics work for NBC during the 1992 Olympic Games. I was mortified; you shrugged it off with one dismissive tail-wag. The fact that they kept you after that is a true testament to how easily people fell in love with you. I’d spend the next six years receiving regular bulletins from my family about your adventures in retirement, which consisted primarily of indulging in the forbidden fruits of a working dog: sleeping on furniture, feasting on table scraps, and being generally lazy. True to your nature, however, you continued to live a life of service to others, devoting yourself to the business of loving your family with the dedication of one who takes pride in having a job to do, even if that job was as simple as being there with a wet tongue and a wagging tail at the end of a long day. You approached life with a Zen-like calm that I always envied and never mastered. You left indelible pawprints on the world and the hearts of everyone whose hand you licked.

When, several weeks ago, it came time for you to leave us, you made your exit as you did all things—in your way, on your terms. Under no circumstances would you forgo your last bowl of kibble; the journey across the Rainbow Bridge was long, after all, and you needed sustenance. I laughed when I learned that, on arriving at the vet for the last time, you wouldn’t settle until you’d shoved your head into a box of blankets for one last, great sniff, and finally, when you were ready, you lay down. I wasn’t surprised to be told that the last look in your philosophical brown eyes was one of all-knowing peace: “I was given a job, I did what I came here to do, and now it’s time for me to leave.”

Some religious doctrine tells us that dogs have no afterlife because they have no souls, but a dog is the absolute embodiment of unconditional love, and what is the soul if not a reflection of God’s love? You were formed for a purpose by the Creator of all things, and I can do no less than believe that when your soul crossed that rainbow bridge, the Creator was there to greet you with a much-deserved pat for a job well done. May you have endless space to run, your wishbones have eternal flavor, your ears be always scratched, and your tail wag eternally.

Coffee, Ableism, and Randomness

If we were having coffee, lucky you, because we’re talking about ableism yet again, and how this word pervades every aspect of my life.

This time, it involved a well-meaning but obviously ignorant technician at the eyebrow threading kiosk in my local mall. I only wanted to pop in because I was starting to look like an unfortunate Hogwarts student who’d been hit between the eyes with a hair-thickening charm. If you’re at all familiar with facial hair threading, you know that part of the process involves holding your skin tightly while the technician threads so that your skin isn’t pulled or pinched as the hair is removed. It’s a simple enough task, but apparently if you’re blind, you don’t know where your own face is, so this simple task now becomes monumentally challenging.

“I need you to hold,” the technician explained, beginning to guide my hands toward my forehead. “Can you do?” And then, turning to my mother, who happened to be with me, “Can she hold?” I wanted to roll my eyes, but they were closed, which would, I think, have diminished the effect.
“It’s fine,” I assured her. “I’ve got it. I’ve done this before.”
“Oh, you do this before? That’s very good.” (It’s also very condescending, but whatever).

If I were telling you this story over coffee, you might be inclined to point out that maybe she was just making polite conversation, and I might have agreed with you if not for what followed. . I placed one hand on my forehead and the other on my eyelid, at which the technician exclaimed, “She very smart!” Really? I was touching my face. You could probably train a monkey to do that. On balance, I chose not to reply, because it’s best not to be snarky to someone who’s about to yank hair from your face. “How about I rip you so you bleed? You like?” No, not particularly, thanks.

Other things on my mind this week: Why is it that the average person will spend approximately 43 days on hold with customer service in their entire lifetime? That’s, like, almost the entirety of my summer vacation. Do you have any idea how much productivity I could fit into 43 days? I could grade roughly 5,160 papers in 43 days…I think. I could also learn to be better at math. Frankly, if hold time doesn’t show any sign of improving, I think call centers should just replace hold music with recordings of Hugh Grant reading John Keats poetry. I think that would bring my blood pressure down from “I’m almost dead” to “Oh my god get off my Island this is my happy place.”

I should probably just implant a chip in my brain that plays British male celebrities reading Romantic and Victorian poetry on loop. Then maybe I wouldn’t regularly wind myself into such a tight ball of anxiety that I break out in hives. My doctor said I should avoid stress, because stress is bad for you. Who knew? I laughed. Hard. Then I started to stress out over that in case she thought I was being rude, so, yeah, maybe she has a point.

You know what, never mind the coffee. Can we have alcohol instead?

Girl reading in bathtub with candles and wine.
Not me, but this is what my happy place looks like.

I Can Do This With My Eyes Closed: Blogging Against Disablism Day 2017

Once again, it’s Blogging Against Disablism Day—a day when people all over the world take time to write about their experiences with disability to dispel stereotypes and challenge attitudes of ableism. Every year, this date creeps up on me like a stealthy shadow that tip-toes up behind me, suddenly grabbing me and yelling “Boo!” This has largely to do with the fact that BADD inevitably falls in the thick of end-of-semester grading for me, when I can’t tell if the headaches are the result of too much caffeine, not enough caffeine, washing down comma splices with shots of Peach Schnapps, or some combination of all of the above.

Then too, this year, I haven’t written a single blog post in…a while—I don’t know precisely how long it’s been since my last post. Periods between blogging for me have become like the periods between going to confession; bless me readers, for I have sinned. I don’t know how long I’ve been away, but my conscience tells me it’s time to return. In past years, I’ve hastened to cobble together deeply philosophical reflections laced with humor about what I’ve learned from my life as a person with a disability; I’ve written about how my disability has made me a better teacher; I’ve written about the dos and don’ts of interacting with a blind person. This year, however, I dipped into my bag of writing tricks and came up empty, my excuse being simply—and albeit lamely—life.

What, you may ask, have I been doing? I’ve been teaching my classes; I’ve been advocating for the improvement of local public transportation for people with disabilities in my community; I’ve been playing fetch with my dog; I’ve been sharing laughs and bottles of wine with friends; I’ve been watching my nephew grow, marveling at how quickly, how eagerly he’s grasping with tiny hands at this big, big world. In short, I’ve been living, and this, quite simply, is the story that we tell every year on this day.

All day, every day, people with disabilities find themselves the recipients of some form of pity. “Life must be so hard for you,” someone will say. “I don’t know how you do that,” a passer-by will declare when we unlock a door, bend down to pick up a book we’ve dropped, or tie a shoe. All the while, we live; we go about our daily routines, performing these and many other tasks, large and small, in various ways. I don’t mean to minimize the challenges that we do face—difficulty accessing buildings, getting disoriented in unfamiliar places, or depending on the kindness of those around us when our adaptive equipment fails or our service animals are sick, just to name a few. Yet our life experiences are not altogether different than anyone else’s. I teach; I write; I make spaghetti sauce while dancing in my kitchen to the “Mama Mia!” soundtrack. I take long walks with my dog; I bake cake from scratch; I go on dates; I cook dinner for friends; I flirt with the cute bbarista at Starbucks; I drink cheap wine and cry during Colin Firth movies. I live a relatively healthy, relatively happy life, with the added twist of doing it all without looking. All of these rituals and routines, so seemingly mundane, testify to the fact that every day, everywhere, people are barreling through the barriers of ableism simply by living. Can you beat that? No, I didn’t think so either.

“But You Don’t Look Blind”: a Reflection on Blogging Against Disablism Day 2016

Several weeks ago, a friend and fellow blogger, Blindbeader, responded to and encouraged her readers to participate in a blogging challenge, entitled “But you don’t look blind.” The challenge asked bloggers to reflect on the statement, whether or not they had found themselves on the receiving end of it, and their thoughts about the statement’s intent and broader implications. As we celebrate Blogging Against Disablism Day, I thought today would offer a useful opportunity to examine this question and the nuances of ableist language.

Who Gets the Comment?

Mostly, sighted people will direct this observation to a blind or visually impaired person whose eye condition is genetic or whose eyes don’t bear the marks of surgery or illness. Someone might also make this observation to a visually impaired person who doesn’t travel with a white cane or a guide dog and appears able to see, read print, and navigate independently using proscription glasses. Many people don’t recognize that blindness, like other illnesses and disabilities, exists on a spectrum; some of us are totally blind, some have peripheral vision, vision in only one eye, or have only light perception (the ability to detect light and shadow). Some of us, like me, have conditions that don’t affect our eyes cosmetically, except for occasional muscle spasms. Since I can only detect light and shadow, my eyes have lost the ability to focus, so I often, especially when tired or in a room with bright light, have difficulty controlling my eye muscles. While it’s often visible if you look closely, someone might not immediately recognize my blindness since I generally try to make eye contact with whomever I’m speaking to, or at least look in the direction of the person’s voice.

Is it a compliment?

Most of the time, when someone observes “you don’t look blind,” she intends it as a compliment. She’s saying—or thinks she’s saying—that the blind person has risen above a disability and refused to let it interfere with the day-to-day rhythms of a fulfilling life. Yet the implicit ableism of this supposed compliment sometimes does more to perpetuate than to dispel myths about disability. To say that we “don’t look” disabled in effect congratulates us for assimilating into able society, concealing our disabilities (as much as we can, if we can) because they make people uncomfortable, or hostile, or can even cost us a job or access to adequate housing. Rather than simply allowing us to comfortably inhabit the bodies we’re born with or have had to learn to fit into, the comment applauds us for performing a “normal,” ableist narrative.

Broader Implications

Ironically, the compliment that applauds us for essentially performing an ableist narrative lends a certain performativity to disability, particularly when we require accommodation; if we don’t appear disabled, very often businesses or individuals will attempt to deny us appropriate accommodation because we don’t appear to need it. As a result, we either have to produce documentation (which can be an inconvenience at best and invasive at worst) or reduce ourselves to performing disability, adopting the perceived traits that you’ve just commended us for overcoming.

Case-in-point: when I moved back to my hometown last summer, I had to apply to ride paratransit because I cannot easily access the stop on the bus route nearest my neighborhood. Paratransit, for those unfamiliar, provides door-to-door service for people unable to drive or to use fixed bus routes because of a disability. You would think, wouldn’t you, that being legally blind and thus not permitted to hold a driver’s license would automatically qualify one for such services, given appropriate medical proof of disability. You would be sadly mistaken.

After submitting my application, I found myself engaging in a strategy session with two friends who use the service to determine how to pass the physical evaluation; in other words, how could I make sure that I appeared disabled enough to qualify for the accommodation I was requesting?
“You’re legally blind,” one friend said. “You’ll qualify. I’m sure they won’t give you a problem.”
“Well, here’s the thing though,” chimed in the other friend. “I don’t know if you realize how independent you are, and in a case like this one, that’s going to count against you.”
“so basically,” I concluded, “You’re telling me that I have to appear helpless?”
“Pretty much, yeah.”

In short, I was expected to perform disability, conform to the mold of what the system expected of a blind person to prove my blindness, because any sign of independence would count as evidence against my case. Blind people don’t have PhDs, or live alone, or hold down steady jobs, or essentially do anything independently, according to that logic. My independence, for which I had labored so long and hard, was now, in an irritating twist of irony, holding me back.

I ultimately refused to bow to this logic, because when we do, we just perpetuate the myth. Living independently doesn’t make me Wonderwoman, and it doesn’t deny me rights to reasonable accommodation. At the other end of the spectrum, reasonable accommodations don’t make people with disabilities helpless; on the contrary, they enrich our quality of life and increase our independence. To assume me somehow less capable because I have a disability, and then to believe me somehow unqualified for reasonable accommodations because I don’t appear to need them assumes false knowledge about my life with a disability. That cliché about walking a mile in my shoes before you criticize? Yeah, that applies here.

Why Can’t We Just Accept the Compliment?

I have tried, over the years, to accept this “compliment” gracefully, but unfortunately, ableist thinking has conditioned us to bristle at these comments—to react with suspicion to any observation that could potentially be an accusation that we are not, in fact, legitimately disabled. Do we want you to ultimately see past our disabilities and respect us as diverse, unique, talented individuals who can contribute to society just as productively as you can? Certainly we do, but are our disabilities also an inescapable reality of the narratives we live every day? Unfortunately yes. The implication that we are faking disability implies that we’re simply trying to manipulate the system so that we can receive services and accommodations that make our lives easier, and it’s this mindset that has actually created increasingly annoying roadblocks for legitimately, legally disabled people to receive those services, whether related to transportation, employment, education, housing, or government financial assistance, the last of which has become so convoluted that many people simply abandon the process because fighting the red tape takes more hours in a day than any human has. When you tell us that we don’t “Look blind,” you imply that we look “normal,” according to your ableist definition of normal, but did you ever consider that for us, our lived experiences in our disabled bodies are our concept of “normal?” Today, as we consider how to break down the stigmas of disability, I challenge you to step back and reexamine the ways that your words and actions can disable us just as much as, if not more than the disabilities we live with.

Question

Has anyone ever told you that you “don’t look disabled” or “sick”? How do you handle this comment?

A Love Letter to my Future Husband

Dear future husband,
I don’t know your name or where you live; I don’t know how or where we’ll meet, or if the sound of your laughter will send the butterflies in my stomach into an Olympic gymnastics routine. I don’t know your favorite food, if you prefer coffee or tea, if you’re an early bird or a night owl. I don’t know if you leave socks on the floor or compulsively fold your underpants at night. I don’t know how your skin smells straight from the shower or if you like the way my hair tickles your face when I tuck my head beneath your chin. But I do know one thing. I know you probably have a lot of questions, because you probably never imagined you’d spend the rest of your life with someone who can’t see. Life has a funny way of blind-siding us like that.

Picture of a couple holding hands (image credit Ed Gregory via Stokpic)

You’re probably wondering how I can hold down a job or cook a meal, or how I’m going to bathe our children and change their diapers. You’re probably wondering how, in the early stages of our relationship, your family and friends will accept me—if they’ll accept me. They will, because together we will help them to see beyond the blindness to the strong, confident, woman of substance who loves you. I can promise you that answers to all of these questions will present themselves in time if you allow yourself to search for them. A relationship is a process of discovery, and when we fear discovery, we go through life in ignorance.

Let these questions be some of the many you will ask in your process of discovering the woman you love, along with discovering how I like my eggs cooked or if I think the toilet paper roll should flip up or down. Don’t let the fear of the answers prevent you asking the question. Don’t let the fear of discovery prevent you from welcoming someone into your life and into your heart who is ready to love you unconditionally.

I can’t promise you that life will always be easy, but of course, no one can promise you that. I hope, however, that during our life together, you will learn to see my blindness not as a burden, but as a gift. You will see it when you tell me that everything is okay and I can hear in your voice, without seeing your face or your body language, that you just need me to hold you for a little while; when the power goes out in the middle of the night and I can find the flashlights and batteries more quickly than you can; when you find yourself pausing to notice how a sunset tinges the clouds with pink just so you can describe it to me; when your hand guides me through our new home, painting a picture of the dreams that will fill the rooms with color and light. I hope that you will learn that we both have tools and talents, strengths and weaknesses to bring to the life we build with each other, but until then, I will cultivate my love for others—my love for my family, my friends, and most importantly, for myself, because the fact that you haven’t walked into my life yet doesn’t mean that you won’t or that I’m not worthy of your love. It simply means our paths have yet to cross, and when they’re meant to, we will both be ready.

Like what you see here?