Tag Archives: disability

No, I Don’t Want to Feel Your Face: or, a Quick Guide to not Insulting Someone with a Disability

This Blogging Against Disablism Day, I find myself reflecting on a refreshingly honest question I received from a student several years ago: “What do you think is the most difficult thing about being blind?”
“Everything,” I quipped, only half-joking.

To the average non-disabled person, living with a disability can often seem like trudging daily up a steep, endless hill that you can never reach the crest of. On most days, I cope as well as anyone, but on some days, I simply don’t have enough spoons—a term popularly used in the disabled community to describe a lack of energy to accomplish simple everyday tasks that a non-disabled person takes for granted. In this, however, we are not altogether different than the rest of you. The experience of the “terrible, horrible, no-good, very bad day” is universal, but living with a disability, or at least with certain disabilities, isn’t necessarily an interminable struggle. It involves developing coping mechanisms that allow us to live normal lives, and normal is a term relative to our own experiences. Harnessing my guide dog or picking up my white cane with one hand and my keys with the other before I walk out the door is just as normal to me as getting into your car and driving to work is to you.

The term normal, when invoked in conversations about disability, sets up a dangerous binary; it associates an implicitly negative connotation with anything that’s somehow different. Someone who navigates the world with a guide dog, or a white cane, or a wheelchair, or a scooter might appear different to you, but this is their normal. When you stare, when you point, when you walk up to us and ask impertinent questions that you’d never consider appropriate to ask a non-disabled person (questions ranging from state of health to whether someone lives alone), you place us on exhibition. On a side-note, I have frequently been asked whether I live alone, always by men, never by women, and always when I’m unaccompanied in public, which raises questions about the intersection between sexism and ableism; why do non-disabled men think it appropriate to approach a woman with a disability in this way?

I raise these issues not to discourage questions about disability; on the contrary, questioning is essential to productive dialogue. As a teacher, I have the job of guiding students through the process of asking questions to gain a deeper understanding of the world they live in. Most of the time, questions come from a place of genuine curiosity and a desire to seek understanding. Having said that, we must also recognize that asking questions about one’s disability potentially crosses boundaries of privacy, depending on the nature of the question. Some disabilities, like mine, are genetic; others are the result of illness or injury. Whatever the cause, learning to cope with a disability is sometimes traumatic and always challenging, and we reserve the right to decide when, how, and with whom to share those narratives of struggle and triumph.

When encountering a person with a disability for the first time, determining what to say or fearing that you’ll inadvertently give offense can create a lot of unnecessary tension. The lists of dos and don’ts can very depending on the person and the disability, but from my experience, here are some of the more common pitfalls to avoid:

1. Don’t tell me that if I pray harder, someday, god will heal me; there’s nothing to heal because I’m not broken, and frankly, he could have saved himself the trouble by giving me a fully functioning pair of eyes in the first place. He had his reasons. I work with what he gave me and don’t ask questions. On another note, as a practicing Catholic, I find this comment particularly irritating because it implies that my disability is somehow the result of my own lack of faith–or worse, my sinfulness.
2. Don’t ask me if I want to feel your face; I really don’t, and I never will—ever, ever, ever, ever. I can’t reiterate this enough, and the world just doesn’t contain enough Purell for me to wander around touching random strangers’ faces.
3. Don’t assume that if I’m with someone that the person is my “keeper”—a word I’ve actually (and unfortunately) heard used before, as if people with disabilities are zoo exhibits. There are, of course, individuals who work as aids and personal care attendants, and this is just the reality of living with a disability—that we sometimes require varying degrees of assistance. This does not, however, mean that people with disabilities cannot form fully functional relationships; we have families, friends, and romantic partners who choose to spend time with us because they find pleasure in our company, not because we require them too. Similarly, personal care attendants, ASL interpreters, readers, drivers, mobility instructors, etc. often develop deep bonds of friendship and mutual respect with their clients—the natural result of the access they’re granted to the daily rhythms and routines of another person’s life. In short, people with disabilities can and do develop strong interpersonal relationships not entirely founded on our dependence on others.
4. Don’t speak to the person with me instead of addressing me directly. This applies particularly in food service and retail. I might occasionally forget the name of an outlandish dish someone’s just read me on the menu, but please do me the courtesy of allowing me to speak for myself. I once had a sale’s clerk in a department store ask my mother questions about my dress size, because apparently my inability to see my reflection in a mirror also meant that I couldn’t judge the shape and size of my own body, even though I’m the one occupying said body. A little sensitivity training over here, please and thank you?
5. Don’t ask me if I can “see any better today,” which sadly has also occurred because some people missed the memo that a permanent disability is, well, permanent. Unless gene therapy makes more impressive strides than it already has, my answer to this question is never going to change.

Believe it or not, the salient takeaway here is both glaringly obvious and profoundly important. People with disabilities are just that–people. We have hearts, minds, hopes, dreams, jobs, families, friends, and talents to share with the world. Extend to us the same respect you’d extend toward any human being. More simply put, to borrow a quote from Henry James, “Three things in human life are important. The first is to be kind, the second is to be kind, and the third is to be kind.”

It Isn’t Only a Diary: How Bridget Jones Helped Me Find Myself

Dear Bridget,
I’ve wanted to write this for some time now, but whenever I sit down to draft a letter, the words get stuck between my brain and the page. It seems odd, really, to suffer an attack of writer’s block when addressing a woman who was once famously accused of verbal incontinence. You, with your candor and ready wit and your lack of (or perhaps refusal to activate) your brain-to-mouth filter, have often inspired me to practice greater honesty in my life, with others and, more importantly with myself. I have also discovered, as have you, that alcohol, while a seemingly effective tongue lubricant for confessing honesty, occasionally does more harm than good. Over the years, I’ve tried to express to others how much your story means to me, but nothing I’ve ever said has felt like an adequate tribute, so in honor of the 20th anniversary of your story’s publication this year as well as your return to the silver screen this month, now seems a fitting moment to thank you.

I first met you as an overwhelmed, twentysomething, budding feminist graduate student in English Lit, between crying over my inability to grasp Michel Foucault and eating entire cartons of ice-cream. When not slaving over novels that I seemed destined never to finish reading and feeling intellectually inadequate because I couldn’t use the word epistemological in a sentence, I gradually discovered that my social life had slunk off into the darkness, crawled beneath a pile of dirty laundry, and died. As I slumped on the sofa with a bottle of wine and a bag of pretzels, I convinced myself, in a fit of despair reminiscent of my elementary school days, that no one wanted to befriend the strange, bookish blind girl; never mind that I was pursuing a graduate degree in English and was entirely surrounded by strange, bookish people. I imagined everyone was attending swanky wine and cheese parties on Saturday nights and couldn’t be bothered inviting me because no one wanted to give me a ride. The fellow graduate student on whom I’d been crushing turned out to be a Mormon divorcee with three kids who flirted blatantly with me while being engaged to another woman and then tried to set me up with one of his friends. Had I known the textbook definition of a fuckwit at that time, I might never have landed in that particular mess, but I digress. To add insult to injury, my roommate (an undergraduate who was also blind) told me one night that “you dress like a woman twice your age, and it’s really off-putting. People think you’re older than you are.” So now I was not only unpopular; I was so criminally unfashionable that even other blind people shunned me.

Thus I found myself, during winter break after that first semester, de-fogging my brain with your diary. As you poured your heart into my lap, counting calories and alcohol units, self-consciously scrutinizing yourself in dressing-room mirrors, and worrying about dying alone and being eaten by an Alsatian, I realized something. Your struggles, your insecurities, your doubts, your fears were mine too. When I agonized over whether or not the size of my butt was the reason I couldn’t get a date or sulked about not being invited to any fabulous parties, you were doing the same. For one of the few times in my adult life, I experienced the thrill of bonding with another woman over the struggles of, well, simply being a woman.

I had spent most of my life struggling to fit comfortably in my own body, let alone fitting in everywhere else. Rationally, I knew that I couldn’t bow to the stigmas of disability; I couldn’t conform to the image that many people associated with a blind person who groped every day for one of three identical pairs of jeans to avoid a citation from the fashion police. How though, I wondered, could I construct a body image that reflected my personality without having my physical appearance and fashion trends filtered through the eyes of others? Trips to the mall were my personal purgatory, spending hours in front of a mirror that reflected nothing to me, relying on others to tell me honestly whether or not horizontal stripes made me look like a circus tent. This reliance on the judgement of others’ opinions of my body, believing that I couldn’t construct a self-image without the ability to see my own reflection, instilled me with a deep sense of self-loathing. I believed that if someone else told me that I was too tall, or too fat, or my hair looked like a bird’s nest, then it must be true, because they could see what I couldn’t. My body was disabled, abnormal, and therefore unattractive, and this, I gradually learned to believe, explained why I seemed to be a social pariah.

Then, Bridget, I met you, and I felt, for the first time, that someone understood me. My struggles, my self-scrutiny, my feelings of inadequacy had nothing to do with my disability and everything to do with the realities of being a young woman trying desperately to keep up with, as you put it, “Cosmopolitan culture.” You, Bridget, helped me to recognize that what I see in the mirror every day is as much a projection of what I believe my self-image to be as what is actually reflected there. On the one hand, you critically yet comically revealed a sadly enduring pressure on women to maintain unrealistic body image standards; on the other, you revealed to me that I wasn’t alone in my insecurity. My seeming inability to maintain a steady, healthy relationship with a mature adult male had nothing to do with my so-called disabled, abnormal body or the circumference of my thighs and everything to do with the fact that I simply hadn’t met the person who was ready and willing to love me just as I am; moreover, it didn’t (and still doesn’t) matter if I ever do, because being a woman of substance means loving myself with all of my flaws, not defining myself in terms of how others, especially others of the opposite sex, choose to see me. You gave me the courage to believe that if I choose to pursue love, I should settle for nothing less than someone who celebrates my strength and values me as a strong, independent woman; if I choose to remain single, my life and my work make no less valuable contributions to society because of that choice.

In the same way that you dramatically imagined that everyone had forgotten to invite you to their Christmas parties, I allowed my acute loneliness to exaggerate the perfection of everyone else’s lives. I imagined that everyone else had a successful job, a fashion magazine-approved BMI, glamorous circles of friends, and wildly sensational sex lives. Their reality, I gradually discovered, was far closer to my own. You gave me what I’d spent most of my life searching for: the validation that my lived experiences as a woman were, in many ways, no different than those of other women despite sometimes being constructed through the lens of disability.

After connecting with your story, my life didn’t magically change overnight, but that reading experience opened a space for me within the communities of women I began to encounter. You helped me to find a voice to participate in the narratives that women told and bonded over every day, from agonizing over the seemingly unattainable quest to find a perfectly-fitting pair of jeans to wondering if the barista at Starbucks who always gave me extra foam was hitting on me. Having reached this realization, I gradually found myself forming deep, enduring female friendships with women who have loved me, laughed with me, cried with me, eaten countless trays of chocolate chip cookies with me, drunk through enough bottles of wine to fill a black hole, and endured hours of agonizing dressing-room scrutiny and relationship analysis as only women can. You, Bridget, with your self-deprecating humor and your willingness to keep buggering on, taught me to embrace the wonderful, tumultuous, imperfect beauty of simply being a woman.

“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?

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!

On the Courage of Living with a Disability: a Reflection (Living Blind Blog Post)

This week, I’m once again over at the Living Blind Blog, where I’m discussing the challenges associated with using words like courageous and inspirational when describing someone with a disability and how such descriptions at once acknowledge and call unwanted attention to a person’s disability. Head over here to check out the post!

As always, thanks for reading.