My Words Are My Own: Language Policing In The Disability Community

“Don’t talk about yourself that way!”
“You shouldn’t devalue yourself!”
“You should always use person-first language. Do not put your disability before your personhood.”

I remember the first time I encountered the language police, and experienced the odd sensation of having my own words criticized and found unsuitable. It’s one thing to be careful when addressing other disabled people and the community as a whole; words are powerful and should be used with care. Even so, I’m not sure I’ll ever get used to being told that the words I use to describe myself are objectively wrong.
If you are at all familiar with the disability community, you’ve probably seen an article or three about the importance of person-first language: “person with disability” supposedly places the person before the disability, preventing people from letting disability define them in any way. (The policing of individual identities has long puzzled me. What is the deal with that?)
I’m perfectly willing to address and describe others in the way they prefer. Respecting individual preferences is a practice I value very highly. Autonomy is a luxury we are so often denied. Far be it from me to take it away from someone else, especially if their voice is not as loud as my own.
However, when it comes to my own identity and disability, I consider my words and preferences to be above everyone else’s. I do not say this out of arrogance or dismissal of the beliefs of others. My ears are always open, and the way I define myself has shifted with time and experience. That said, if I want to call myself visually impaired instead of partially sighted, disabled instead of differently abled, or normal instead of special, that is my prerogative. I do not feel that anyone has the right to dictate how I ought to view myself, particularly not on my own blog. (Besides, I find “person with a disability” clunky, especially when it comes up multiple times. It’s just quicker and easier to say “disabled.”)
For the most part, this misplaced desire to correct and police my language comes from misguided, well-intentioned able people, who do not understand that just because that one blind guy they know doesn’t mind being called special doesn’t mean they’re at liberty to assume everyone feels that way. I’m constantly running into the frustrating notion that disabled people’s wishes are not as important as nondisabled people’s. I am angered and dismayed by the idea that they know better than we do, and it seems that even those with minimal knowledge of the community are willing to tell us we’re wrong.
Surprisingly, though, some of this policing comes from fellow disabled people, who seem to think that I am somehow harming or degrading myself by using terms they deem offensive. Offence is ultimately an individual experience, and I do not believe anyone can seriously expect to know what should offend me and what should not.
I personally find euphemisms like “differently abled” and “handicapable” repugnant. I see them as proof that society still wishes to tiptoe around disability, remaining unable to fully accept and make peace with its existence. Branding me special or differently abled takes away from the fact that my condition is basically just a hardware failure. No, it does not have to define me, and no, it does not consume my whole life, but yes, it’s a meaningful part of me—one I’ve learned to live with in relative contentment. There is no need to gloss it over or refer to it using roundabout language designed to make able people feel better about it.
Please do not police my language when I describe myself. Please do not presume to know how I should treat my own identity. Please do not shame me for the way I choose to look at myself and my place in the wider world. By all means, let me know your perspective on the best terms to use in general, but do not take it upon yourself to set me straight when I’m talking about myself. When it comes to my blindness, and mine alone, I know best.

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Chicken Soup For The Nondisabled Soul (And Why You Won’t Find It Here)

Along with being asked why I’m so angry and negative, I’m also advised, by able and disabled people alike, to be more positive. Sure, I’m allowed to write about exploitation and discrimination, but why am I not serving up more feel-good, inspirational content? Where’s the comfort food? Where’s the acknowledgement that the world is, at its core, full of decent people who just don’t understand me? Where?!

I know what so many people want: they want chicken soup. They want brief, digestible content that reminds them it’s not all bad and that life is essentially good, no matter what. People certainly enjoy rage-fuel, and my passionate posts receive far more attention than my sweet little gratitude pieces, but there is still, it seems, a demand for what we in the disabled community lovingly call “inspiration porn.” You know the stuff—content that portrays disabled people in a light most pleasing to the nondisabled eye. In these pieces, we are courageous, steely individuals with more guts and gumption than anyone else would ever need (and the drive to use them). These pieces highlight inspiring people who have achieved ambitious heights, shattering expectations with an appealingly musical crash. They are high-powered athletes, successful entrepreneurs, survivors of devastating illness and injury, or astonishingly talented superstars. They have “overcome.” They have “transcended.” They have “made it.” Life as an everyday (and unbearably boring) disabled person is a battle, and they have “won.” The rest of us? Well, nobody really wants to hear about us unless we’ve been thrown out of a restaurant for having a service dog, or been paid less than minimum wage by Goodwill. The stories the public seems most attached to are the ones where a disabled person is either beating the odds in the face of adversity, or standing proud and unflappable after shameful mistreatment.

These reassuring bowls of chicken soup are not just favourites of those with no disabilities. They’re also beloved by many in the disabled community, who are convinced that the only right way to be disabled is to reach newsworthy goals. There’s only one acceptable narrative, and if we don’t fit neatly into it, we’re doing it wrong. The only way to get the world to care about how we are mistreated is to uplift them. Make them admire us, and after that, maybe they’ll come around to respecting us as well. You know, eventually.

I like a good story as much as the next person. I’m proud of my disabled peers, who really do work very hard and yield impressive results. I admire and respect their strength, even though I know they wouldn’t have to be so strong in a different, more accessible world. I laugh and cry with them, exulting when they succeed and commiserating when they fail. I share empowering stories when they do particularly well, so that others will know they are more capable than many might imagine. Inspiration is not, in itself, toxic, and positivity in moderation is indeed excellent nourishment for anyone’s soul, disabled or otherwise. The blog has been, I hope,  a vehicle for empathy and understanding as often as advocacy and education.

We need to be vigilant, though, because it’s so tempting to conform to the narrative of disability I discussed earlier—the one demanding we remain appealingly brave and heroic at all times. We already know that living our lives does not necessarily require heroism, and we also know that we deal with disability because there’s no alternative, not because we’re superhumanly strong. The public doesn’t know that all the way down, though, not yet. If we don’t pay attention to how we are portrayed by popular media (and by each other), we will inadvertently place strain on ordinary disabled people simply trying to live their lives.

Not every disabled person is brave at all times. Not every disabled person will soar to new, hitherto unexpected places. Many of us will stumble, and fail, and give up, at least temporarily. Many others of us will live quietly and contentedly, just as the majority of nondisabled people do. We need to remember that it’s okay to stumble. It’s okay to falter. It’s okay to break away from the inspirational mantras circling in your head long enough to remember that you are not obligated to feature in the Huffington Post. Your life is meaningful because it is yours, and is not made less meaningful if you never break a glass ceiling or awe the masses. Plenty of people go through their whole lives without doing anything of note (I expect that will be my own lot, and I’m okay with that) and they’re still perfectly happy. You deserve an accessible, welcoming environment whether you’re “making a difference” or going quietly about your business. Our deeds do not render us eligible or ineligible for decent treatment. Having a disability or illness does not have to shape your personality or desires. Being brave and strong should not determine whether you deserve the struggles you’re up against.

Reach for the stars, if that is what you believe you should do. Don’t succumb to the doubts and misgivings of others. I’m the last person to limit you. While you’re aspiring, just keep in mind that you don’t have to function as living chicken soup. If you want to be ordinary, if you feel too exhausted to be strong at all times, or if you fail spectacularly, know that it’s an acceptable circumstance and, while you can always get back on the horse, you don’t need to be inspiring while you do it. If you need to cry, to rage, to crumple, please do. Gather your support system close and let them carry you for a moment. You’re allowed.
In short, you do you.

Looking for chicken soup? Sorry, I’m fresh out.

Fearing The Pigeon-Hole: Or, The Trials Of Being A Disabled Writer

During a mock interview, the interviewer skimmed through some writing samples, noticing how many of them were directly related to disability. He then asked, without a trace of irony, whether I was “all about accessibility?” I didn’t have a coherent answer for him.
After mentioning blindness in a piece of creative writing, my classmates pressed for details, appearing to overlook the fact that the story wasn’t about being blind at all. I was writing about love, familial obligation, and social isolation, but all people seemed interested in, at least at the time, was the blindness angle.
Writing a blog about disability advocacy is hard, honest work, but many people believe it is the obvious choice for a blind writer. It is generally assumed that disabled people only ever write books, articles, and blogs about their disabilities, and all too often, this is proven true. Most of the blind writers I know focus, if not exclusively, then predominantly on their disability and how it colours the world around them. They may engage in all types of social advocacy, but disability tends to be at the forefront. They may have a varied work history, but much of it might involve working for advocacy organizations. We are, in short, pigeon-holed.
As I embarked on my modest little writing career, I began to fear the pigeon-hole. I wrote stories and articles that were completely devoid of disability-related themes, just so I could avoid being put into a neat little box. I explored every other facet of myself—Meagan as woman, Meagan as student, Meagan as writer and so on—but tried to write around blindness so I would seem more nuanced and less typical. I fought hard when classmates and instructors would press for more information on my disability, especially when I deemed it to be peripheral to the writing in question. I resisted when people suggested that my writing would only be unique if I included my disability, as though the rest of me was incurably boring without it. I became frustrated when I was told to “write like you do for your blog,” thinking this meant I was only of interest when writing about my broken eyes.
What I failed to understand, though, was that my disability-related writing was appealing simply because it was direct, confident, and convincing. I wrote with an authority I struggle to maintain when writing about other subjects less well-known to me. My straightforward and relatable approach on the blog was what made others want to see more of that style, not the blindness itself. People didn’t want more of my blindness, per se; they wanted more of me, period.
Nervous that I would inadvertently paint myself into a corner I would never emerge from again, I considered dropping my blog altogether, to weaken the associations between my writing and my blindness. Would having a blindness blog peg me as a one-trick pony right off the hop?
I asked myself what I’d write about instead. Contrary to the beliefs of many, I have wide-ranging interests, and could probably write several blogs if I had the time and energy. My bibliophile mind would have no difficulty conjuring endless posts about my reading life. Certainly my adventures with mental illness would provide ample fodder for a blog all on their own. I could easily write about music, popular culture, technology, and even philosophy, without breaking too much of a sweat. If I thought enough of my writing to believe people would actually enjoy them, I could cover a lot more ground.
It took some time, but I’ve come to realize that writing “Where’s your dog” does not have to pen me in as a writer unless I let it. Focusing on disability in one medium does not restrict me in others. Writers are, in theory, limited only by their time, energy, and ingenuity. I can submit to as many publications as I’d like. I can establish as many blogs as I please (though I think one is enough, for now anyway). I can explore the multi-faceted world I inhabit just as fully whether I have a blindness-related blog or not. And, if I fear that employers and the casual reader will dismiss me as that one-trick pony, why, all I can do is prove them wrong.
Further, if I do choose to write about my disability in relation to the wider world, that’s not shameful or lazy. If the everyday woman can write about being female, and the everyday lover can write about being in love, then surely I, the everyday blind person, can write about being blind without sacrificing self-respect. Surely disability, like any other minority trait, is enough to give me an interesting perspective on the world? After all, I greatly enjoy the perspectives of fellow disabled people. So, why shouldn’t my own writing about my blindness be truly meaningful?
Society is so often putting us in boxes, telling us our place, and shaping our narratives. In this case, though, the only one stuffing me into the pigeon-hole was me.

Disability: The Gift That Keeps On Giving?

I was intrigued when I found out that Pope Francis planned to address disability. Historically, religious institutions have treated disabled people as angelic gifts from God, meant to represent innocence; living examples created to inspire love and compassion; or burdensome, cursed individuals who must be either healed immediately or cast out. Whichever viewpoint I analyze, it’s clear to me that none of these depictions of disability is accurate, and they are all potentially dangerous.

The “Cool Pope” disappointed me, however, when he placed himself firmly in the “gifts from God” camp. There goes progress, I thought. I’m not part of any religious institution anymore, but that has not limited my exposure to this ideology. Plenty of nonreligious people believe our disabilities are gifts—to the world, if not to us—which are meant to inspire goodness in other humans, and to foster special strength when fighting adversity. The idea, it seems, is that while disability is undoubtedly difficult and certainly not ideal, we’re given it for some mystical, predetermined reason, and our purpose in life is to function as a blessing to the world through our unique perspectives and commendable fortitude. People appear to subscribe to this belief whether they believe in a specific God, a nebulous higher power, or nothing at all.

You might think this is a refreshing change from the disability-is-universally-terrible myth, but it’s not much of a respite when you examine it closely enough. Once again, the ideology of disability perpetuated by able-bodied people dehumanizes us, placing us on either a higher or lower plain, depending on your perspective. Some would say higher, because we’re blessed with special powers of endurance, and what’s not flattering about being considered a “gift” to all the world? Some, like me, would consider the plain lower, because I find the viewpoint disturbingly backward. Disability is not written in the stars; or, at the very least, it is not usually inexplicable. People are disabled because of injury, disease, genetic disorders and so on, not because their destiny is to function as a living advertisement for the virtues of compassion. Believing that my disability was given to me for some mysterious purpose I am called to fulfill is a very heavy load to bear. My disability is neither a gift nor a curse; it just is. What I do with it is mine to decide.

I know it’s comforting to think of my blindness as something positive, and it does have its upsides (though I’d argue that I’d face plenty of hard times without it and could learn most of the same skills if I were sighted). This comfort is false and cold, though, especially since I’m not bettering the lives of others by default. Each time my blindness gets in my way—prevents me from finding employment, subjects me to discrimination, hinders me in all the ways it does—I don’t glow with purpose or rest in the knowledge that suffering is part of my destiny. What I do is get on with it.

As I’ve said many, many times now, I don’t spend my life feeling miserable or bitter. Genetics do what they do. That doesn’t give me or anyone else license to pretend that disability isn’t negative, though. I don’t subscribe to the concept of disability being some kind of transcendent experience or perk. It’s something I work around–largely because of the world’s attitudes and not because of my broken eyes themselves–but it’s not something I’m proud of.

So, next time you want to placate a disabled person—or the loved ones of disabled people—by insisting that disability is a divine gift, stop and think about what that might mean. Getting rid of this misconception is just one more way I can be thought of as fully human: flawed, but equal.

What Does Blindness Look Like, Anyway?

I was at church a few weeks ago, and a women’s group I’m involved in was doing a bible study led by a woman who happens to be blind. We watched a video series featuring a blind person, and someone made the comment ‘You know, she doesn’t look blind!’ Of course I turned and said ‘What exactly does blind look like? Why doesn’t she look blind?’ While I had a smile in my voice, I silenced the whole table because no one wanted to answer. Their silence was answer enough.

This quote, contributed by one of my blind readers, perfectly illustrates the awkwardness that ensues when sighted people casually observe that someone doesn’t “look blind.” Many mean this quite literally, of course. Canes, guide dogs, and prosthetic eyes are dead giveaways, and they are fairly well-known symbols of blindness. So, when some people say this, they might simply mean that someone’s eyes look to be in working order, and they don’t have a mobility aid in sight. Unfortunately, there are many other sighted people whose comments are more complicated. Upon closer examination, the implications are somewhat troubling. It is rare that these people have given much substantial thought to what blindness is supposed to look like, and are reluctant to analyze their own perceptions when they are challenged.
So, what does blindness look like, really?
Maybe it looks like an anonymous person waving a cane around, or marching along with a dog. Maybe it looks like someone shambling in an ungainly manner like something out of The Walking Dead, arms outstretched, searching carefully for obstacles. Maybe it looks like someone who has half-closed eyes, or milky white eyes, or no eyes at all. This last, at least, makes a kind of sense.
For me, though, blindness looks like a normal person doing ordinary things. For me, blindness looks like anyone you might meet on the street, the only difference being a mobility aid and, in some cases, prosthetic eyes or dark glasses. For me, blindness looks normal—or as normal as any part of the human experience can be. Yes, blindness sets us apart; there’s no denying that. Still, people’s perceptions and the reality look quite different.
Whenever someone tells me that I don’t look blind, it’s meant as a compliment: they mean that I’m competent, graceful, and normal-looking. They mean that my eyes are pleasing to look at and seem natural enough, even though they move about constantly, never really focusing on anything in particular. They mean that I’m far removed from the graceless, clumsy mess they often picture blind people to be, and it surprises and delights them.
While I was trying on wedding dresses, my bridal consultant was apparently blown away by how quickly and easily I could move around in an unfamiliar environment. I don’t consider this of note, really, but she certainly did, and more than once she said things like “I don’t believe your blind!” and “You must be faking it!” For her, ease of movement and grace were not associated with blindness, and in her own strange way, she was trying to praise me.
The thing is, this compliment is backhanded, even when it isn’t meant to be. It is predicated on the assumption that a blind person will be pleased to be singled out from the rest, and happy to be recognized for their ability to participate fully in the wider world. We are expected, it seems, to look down upon other blind people—those people who look conspicuously blind—and be grateful that we’re not among them.
I’m not proud to be blind, per se; pride seems a little absurd to me. Blindness is, at its base, a hardware failure. That said, I’m not ashamed of it, either. I don’t see it as a stigma I am railing against at all times. My life’s mission is not to seem as sighted as possible or to stand out because of sheer normality. My life’s mission is to go out there and be a decent human being; to write and edit for a living; to play a little music in my spare time; and to love, laugh, and enjoy my time here with abandon. Blindness isn’t something that should define me overall, even if it is a significant part of my makeup.
So, what does blindness look like? Well, I think it looks … human.

“Why Are You So Angry?”

Almost every person who so much as encourages advocacy will face this question at some point, and while I don’t get it often (my writing style isn’t what you’d call vitriolic), I have been asked this multiple times. “Sure, you deal with a lot,” they say, “but do you really need to be so pissed off about it? Do you really need to write a whole blog whose purpose is to complain, and point out all that’s wrong with the world?” My answer to this is always the same: “Huh?”

I’m not an angry person. I like my life, even when it’s difficult, and I have great faith in the idea that human beings are capable of kindness and enlightenment. I spend most of my time just being Meagan, and the rest is usually spent trying to educate, not lay blame or spew hatred at the world at large. Yes, I do go on about what’s wrong with society. Yes, I do sometimes vent my frustration on a public forum. Yes, I get angry sometimes.

Do I spend my life in a state of perpetual fury? Do I direct hostility toward the sighted population? Do I focus more on being a malcontent than on trying to make the world that little bit better? Nope. I’d much rather bring positivity into this world than anything else, even as I’m being direct and unyielding concerning my rights as a human being.

 

I must confess that I’m shocked at the public’s expectation that we should be virtuous angels, patiently awaiting the day when the world will give a damn about the injustice that is built into society’s very structure. I am amazed that people are surprised when we object to systemic discrimination and harmful stereotyping. I mean, would they shoulder these things with unwavering grace? I don’t think so. That said, do we have the right to reject all efforts to reach out to us? I think not.

 

I did not create my blog with the intention of using it as a source of fatalistic ranting. I set out to maintain a safe space where ideas could be shared, questions could be answered, and advice could be dispensed. I’ve always kept one goal in mind: how can I foster empathy and understanding? How can I describe what my life is like, and how can I use that insight to help others?

I’d like to believe that regular readers realize I’m prone to seeing the good in the world. I hope they have noticed my tendency to right wrongs and offer solutions rather than condemn specific individuals and the mistakes they make. I hope, most of all, that I make my readers feel inspired, not hopeless, and determined, not angry. I resent those disabled people whose sole purpose appears to be making “normal” people miserable. I don’t expect them to maintain a sweet disposition when they’ve been fielding the same ignorant questions and withstanding the same discrimination for years on end. It’s acceptable to indulge anger; it can be a powerful tool if it’s used correctly.

That, of course, is the key: one must use anger judiciously. There’s enough rage-fuel online without worsening the problem. It wastes time and energy we could be devoting to initiatives that improve our lives. Accessibility and inclusiveness benefit us all, whether we’re disabled or not. We can all share in the fruits of disabled people’s labour. We can all read and write blogs like this one. If we get a bit angry sometimes? Well, I’d say that’s human, wouldn’t you?

Dear Parents: Think Before You Share

If you’ve ever googled any specific disability, you’ll find public Facebook and Instagram profiles, blogs, biographies, anthologies, and videos about what it’s like to parent a disabled child. The angle might change a little. Some parents want to tell you that it’s all roses; others want to point out that it’s occasionally rather awful; some want to assert that it’s somewhere in between. Whichever angle they take, though, their actions amount to the same thing. They are constructing, however unwittingly, a publicly accessible wealth of data about their children, often in the absence of knowledge or consent. Your blind toddler is too young to tell you whether he wants his pictures posted publicly. Your twenty-year-old mentally disabled daughter may be incapable of consenting, even if she does know you’re uploading pictures of her for the world to see.

I never really gave much thought to the activities of parents on social media until the advent of the #FreeTheNipple campaign. Facebook got in trouble for removing pictures of breastfeeding mothers, and there was, predictably enough, mass outrage. People assumed that the removal was due to an inability to tolerate a naked nipple. Breastfeeding isn’t gross or shameful, said protesters, and there is no reason to take down such photos when equally explicit ones are shown elsewhere in much less innocent contexts. Amid all the righteous anger, though, nobody seemed to be considering the rights of the children in question. Everyone was fixated on the woman’s right to display her breasts, while failing to analyze whether the children should be in full public view before they are old enough to know what Facebook is, let alone give informed consent. This isn’t 1990. Photo albums aren’t locked up in a dusty closet. Long after your friends are done cooing over your little one, the pictures remain easy to find, especially if your privacy settings aren’t as airtight as they ought to be.

I suppose one might say I’m fear-mongering; what’s the harm in showing cute pictures of your kids, after all? I really think that the game changes when it comes to disabled children. Many of the blogs and public profiles dedicated to parenting contain details of bad days as well as good days. The indignities of life with, say, autism are often described in full detail right alongside the joys of parenting these children. It’s one thing to post a cute picture of your daughter using her first cane, but quite another to go on at length about your autistic daughter’s most recent meltdown. I don’t know about you, but I wouldn’t appreciate having that plastered all over the internet for everyone to…what, sympathize? Gawk? Cluck their tongues in pity? Hail my mother as a martyr? None of these reasons seems adequate to me.

I get it: parenting a disabled child is sometimes exhausting, lonely work. It can be therapeutic to post your struggles online, where you may seek support from informed strangers outside your immediate social circle. It’s comforting to find a network of parents just like you, who can offer advice and guidance. While you are enjoying all this support, though, I urge you to take a moment to consider the focal point: your child. To what extent are you sacrificing their personal privacy for public solidarity? Are you surrendering too much detail about their lives where anyone at all can see it (including future employers, peers and so on)? Are you exposing potentially sensitive information that they may one day be upset by? The blogosphere can be a dangerous place to express unpopular opinions which may be why so few voices are countering the main viewpoint.

It’s one thing to blog about yourself. While I am relatively circumspect about what I discuss, I do write with intentional frankness. As someone once described it, my writing “goes there” and I’m proud of that. I do mention others and explore universal themes, but the blog will always have its roots in my personal experiences. Privacy, it seems, is a human right that is cherished less and less. If you’re going to endanger privacy, let it be your own.

When it comes to your disabled child, though, you should be as careful and thoughtful about your posting habits as you can. Ideally, you should remain anonymous, but if you can’t (or won’t), at least be cognizant of your actions’ potential impact. Maybe it feels liberating to hammer out a post after a long day of dealing with hardship. Maybe it gives you pride to compose a detailed article about how your blind daughter has finally figured out how to, say, navigate her first school independently. It feels great to share these things, I know. Our natural human desire to share everything that matters to us is what keeps Facebook and Instagram in business, after all. Just remember, as you fulfill this desire, that it’s not all about you.

It is not necessarily selfish of you to blog and share photos and other media about your child publicly. It’s not inherently wrong. In the context of an anthology or other formal document, it might even be a good thing, because you are bringing to light different facets of parenting (under your editor and publisher’s watchful eyes). One of my editing projects centred on just such an anthology, so I’m the last person to say none of this information should be available.

Do hear me out, though: it becomes risky, whether you’re doing it for support, or to raise awareness, or to encourage others. I’ll put it very bluntly: your need to feel the warm fuzzies with every careless post is far less important than your child’s right to privacy. Don’t use good intentions as your escape hatch. Once you release personal information, it can’t be recovered. We’ve all heard the lectures. If your physically disabled infant is too young to consent, you should be very strict about what you share. If your mentally disabled daughter is incapable of giving informed consent, you have to be even more respectful of her rights.

Parenthood is not ownership. You are raising people who may be able to view the material you exposed when they were too young (or otherwise unable) to say no. These children are not walking, talking sources of validation. They should not be used as a “like” generator. They do not exist to promote your worth as a parent and you should never treat parenting as reasonable justification for playing the martyr. Most of you would never do any of this, but you still need to put your child first. So please, think before you share. Children have rights, too.