Category Archives: Blindness

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?

When Love Opened my Eyes (Vision Through Words)

This week, I’m over at the Vision Through Words blog, which features work by blind and visually impaired writers. My essay, When Love Opened My Eyes, shares a memory of a relationship I was in several years ago that challenged me to embrace the ways that my disability deepend the relationship.

As always, thanks for reading!