understanding

Guest Post by Elise Johnston: Smart People, Silly Questions, and Knowing What We Cannot See

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Most blind people who have spent any time dealing with medical professionals have learned to expect some very bizarre questions. Experienced practitioners can sometimes seem disconcertingly ill-informed as soon as disability is involved. Trained as we are to place vision at the centre of the human experience, it’s not all that surprising that even the experts think blind people can’t, say, live a normal life, or experience romantic attraction, or independently express their own identity.

Elise Johnston, a prodigiously talented trans writer who has been blind from an early age, has graciously agreed to share her own experience with the “smart people, silly questions” phenomenon. I hope her story will make you laugh and, more importantly, get you thinking about how and why medical professionals–the ones authorized to make life-changing decisions for us–assume that people without sight are people without understanding.

“So,” the psychiatrist asks you, in a delicate, hushed voice, “as a blind person, how can you be transgender?”

Pause. Breathe. Collect thoughts. Ignore impulse to scream like tea kettle.

You know how you’re sitting on this couch, petting the psychiatrist’s snuffling Boston terrier and telling your heart, “No, it’s not a good idea to jump out of mouth. That won’t bode well for getting the letter of recommendation for gender affirmation surgery. That’s the reason for being here, remember?” You know about this, right?

And you know weird questions might be coming because this dude just gives off that vibe. Also, you’re blind, and blindness makes smart people say stupid things.

But compared to able-bodied cisgender dudes with the power to make or break the lives of desperate patients, what the hell do you really know, right? Right?

“Wait,” says Meagan, reading the first draft of this blog post, “I doubt all of my readers know this gender jargon.”

Fine. I’ll explain.

[Trigger warning: special rainbow snowflake words and concepts follow. Hang on to your pearls.]

Gender

First of all, take the equipment out of the picture. That’s biological sex, not gender.

Okay, so find some new parents and watch how they treat their baby. Blue balloons or pink? Barbies or trucks? Ballet or soccer practice? “She’ll break hearts” or “he’ll go places?” That’s gender. Sure, there are beautiful exceptions to the binary, but that’s the general pattern, the pattern of gender as we know it.

Lest there be lingering confusion, gender is not about who you’re attracted to (or not attracted to), and has no specific relationship to sexual orientation. So forget about sex. That’s what I’ve done most of my life. Which leads us nicely to…

Dysphoria

Imagine you step in a rain puddle and soak your socks. And you’re not allowed to change your socks for the rest of your life. And every time you go somewhere, you step in a new puddle and soak your socks again.

Now imagine that your sock is your body and the puddle is your family, friends, teachers, employers, neighbours, everybody. They’re always drenching you in cold wetness. They can do this by calling you a name that doesn’t fit or using a pronoun that doesn’t fit.

If you don’t have an imagination—let’s face it, so many of us don’t—ask everyone in your life to use the opposite pronouns when talking about you and call you a name that’s not traditionally associated with your gender. Feels weird, right?

This weirdness is called misgendering, and the feeling of constant intense discomfort is called dysphoria.

Transgender vs. Cisgender

Everybody is assigned a gender based on whether they have a penis or a vagina when they’re born. “Let’s just forget about the huge number of people who have neither or a mixture of both,” says the doctor.

If what the doctor says agrees with you on the fundamental existential level, then hurray! You’re cisgender. You can go about your life discovering other interesting challenges to occupy you until death, like deciding how best to troll Meagan’s blog.

If the doctor’s assignment feels entirely, devastatingly mismatched, if you live with permanent feelings of depression and wet-sock misery, then you might be transgender, and wish to pursue transitioning.

Transitioning

This is when a transgender person explores a gender other than the one they were arbitrarily assigned. They might try on their siblings’ clothes, prompting disgust and anger and plenty of parental panic. If they have facial hair, they might burn it off with lasers or electricity. They might pursue gender affirmation surgery to help with dysphoric feelings, and get to deal with gatekeepers like our fine psychiatrist friend.

They may also take estrogen or testosterone. These can cause breast development or lower the pitch of the voice, among other marvelous things. Think puberty.

Back to My Story…

I presented the psychiatrist and his dog with my favourite transformation metaphor, with much solemn throat-clearing:

“When I was a young caterpillar, I despaired of my fuzziness, especially when said fuzziness appeared on my face. I longed to grow breasts—I mean wings—and take to the sky as the butterfly I felt like on my rainbow insides. Life was a tipsy wheelbarrow, full of loneliness and despair, tossed about on a stormy sea, sailing downhill toward Suicide Lake.”

It’s the same story I’ve told my parents, my friends, my therapist, that other psychiatrist, the GP who prescribes my hormones.

Except, then came the curveball, the weird question to end all weird questions. Here it is again, just for effect:

“So, as a blind person, how can you be transgender?” he asked. “Like if you can’t see women, how can you possibly know that you want to be one?”

Oh dear, I thought, I have just boarded the elevator of wrongness, and this elevator music is a symphony of shit. Let’s break it down:

This PhD thinks blind people can’t grasp gender like a sighted person can.

This credentialed, respected, supposedly woke expert thinks one must see woman to know woman.

Anyway, because I have access to someone else’s blog, and words are free, here’s what I told the psychiatrist. Maybe you might identify with some of it, especially if, like me, you don’t tend to base your idea of gender on how people look, invalidating the lives of blind people everywhere.

Firstly, in my world at least, gender isn’t biological. It’s not a matter of body, it’s a matter of brain. Or maybe it’s my gut? Or my heart? My bones?

I’ve been convinced for as long as I can remember that I am a woman, making one of the assumed premises of the psychiatrist’s question invalid: I don’t want to be a woman; I am a woman. What I want is an exterior that matches my interior, and I don’t need sight to be sure of that.

Secondly, my experience of gender is one of relationships, how people treat and mistreat me. Whether I’m included or excluded in activities and spaces – am I invited to the stag or stagette? It’s about my assumed preferences on beverages (wine or beer?), books (YA romances or SF alien porn?), movies (action or chick flicks). It’s about whether I’m expected to feel one way or the other about comedy, music, personal hygiene, hobbies. It’s about the instrument I’m assigned in band class (baritone, because flutes are girly), the birthday presents I receive, the clothes I’m expected to wear. It’s not all about the clothes, though god, it really is all about the clothes.

I do, of course, have dysphoria about my body. Else I wouldn’t be sitting on this couch talking to this psychiatrist, hoping he can unlock the doors of his mind and accept the idea that people without sight are not people without experience.

I am indeed fortunate that my dysphoria isn’t triggered by seeing other women, but it is triggered by lots of other things, like hearing about periods, hugging them and feeling a chest that isn’t flat as a pancake, bumping into hips that aren’t cursed by narrowness, and knowing that those lucky bitches do not have to contend with the cursed crotch bulge.

So yes, on some level, my dysphoria is triggered by intellectual knowledge and not by visual reminders, but unlike certain cisgender dudes with doctorates, I actually use all of my senses around people, and even, on occasion, my brain. In fact, for me, one of the most dysphoric things in my life is my voice.

The Point of it All

The point, thanks for asking, is that whether we’re blind or sighted, our senses of self are bound up in our gender. I’m not sure about everyone else, but I don’t need functional eyeballs to tell me when there’s something out of whack with my sense of self.

But I’m just an anxious, blind transgender lady with two post-secondary degrees and a shit ton of lived experience.

What do I know?

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Counting My Spoons: A Life Lived in Pain

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It’s easy to be philosophical about blindness. I don’t have to stretch much to say it’s opened doors I never would have discovered if I were sighted. Blindness has compelled me to meet interesting people, acquire specialized skills, and develop a readily adaptable spirit. It’s not always fun—not even mostly—but it’s not without its upsides.

I am not philosophical about the chronic pain I’ve lived with for almost ten years. A decade of tension pain and migraines has weathered and exhausted me in ways I’m still attempting to put into words. If blindness is like the common cold, interfering with everyday life but easy enough to accommodate, chronic pain is like the flu. Just when you think you’re finally feeling strong enough to conquer your to-do list, or socialize with friends, or get some writing done, it sweeps over you, leaving you in a nauseated heap. At that point, there’s nothing for it but to slink off to bed, cancelling plans and sowing disappointment as you go.

Often enough, I can hack it. How else would I manage to hold down a job and maintain some semblance of a life? On most days, I grit my teeth, slather on the peppermint oil, and plaster on my smile. I carry tissues for when my eyes water with the pain, and can occasionally be found slumped over my desk with my head in my hands, but I can usually be depended upon to seem healthy and energetic.

Usually.

If you’ve ever spent any length of time with me in person, there’s an excellent chance I was fighting pain. If you’ve tried to arrange a phone call or coffee date with me, I’ve probably pulled out at the very last minute. If you’ve worked with me, you’ve seen me press my fingers into my forehead when I think you’re not looking. If you ask, I’ll say I’m fine. Most of you know I’m full of it, but it would be far too awkward to pursue the matter.

Loved ones have received text messages like “I’m not in pain today!” People who know me well have seen me cry, throw up, or lash out when my headaches are stronger than my resolve to seem normal. Managers have heard a dozen variations of “I need to leave early,” or “I need to sit quietly in this corner until this backs off.” On the very worst days, they get “I’m sorry. I tried, but I can’t come in today.” Housemates and partners have sent me back to bed after I’ve insisted I’ll be okay. Each time feels like a battle I’ve lost.

My fiancé deals with the brunt of it. No part of our relationship is untouched by the unpredictable whims of a body in pain. Dates are postponed, and postponed again, and eventually forgotten altogether. Dinners are skipped because my migraine has sapped me of my hunger. Harsh words escape because while my control is exceptional, it is not perfect, and pain makes me feel as defensive as a wounded animal. Domestic duties are shirked, and I watch guiltily from bed as he sorts laundry I am too sore to hang because I can’t reach above my own head. Many a time, he has cooked, cleaned, and run errands while I cuddle my heat wrap and take enough Excedrin to make an elephant tremble. I interrupt intimate moments, rolling away to hide angry tears; I am too tired, too sore, too weak to participate. Through it all, he is incredibly understanding, but the inequality is its own kind of pain.

And then there are the good days: days when I’m thrumming with energy, ready for anything. During these rare days, sandwiched between “okay” and “terrible,” I sing, clean, write, and tackle all the tasks I’ve left undone. I squeeze every moment of life I can into these precious pain-free days, balancing my enjoyment of the freedom with the knowledge that it never, ever lasts. My good days fool everyone into believing I’m all right. Unlike me, they still have faith that it’ll stay that way.

The crash, after a string of good days, is the worst.

I count my spoons with care, trying to account for the unpredictable. Do I spend this “good day” doing housework or writing? If I only have the energy for one social gathering, but I’ve booked two, which should I cancel? Which friend would I rather upset? Whose disappointment is easier to bear? Which task can I afford to push back? Since work is normally my top priority, and getting through it each day is costly, what should I do with the few hours before bed?

Know this, dear reader: my heart is so much bigger than my energy. My desire to connect with you, return your email, meet you for lunch, text you when you’re lonely, help with your creative project, is infinite. My ability to fulfill that desire is decidedly finite. If I’ve missed your call, cancelled our plans, failed to meet your deadline, ruined your good time with my exhaustion—I am truly sorry. I want to do better. If I had enough spoons to make everyone happy, I’d use them, because all my friends and all my family members and all others who depend on me are worthy.

So I ask everyone I’ve hurt, everyone I’ve disappointed, everyone I’ve let down: forgive me. I am getting better at this pain thing, but I am still learning. I don’t always distribute my spoons wisely. I overestimate my strength and overbook myself. I make promises I fully intend to keep, and need more time than I thought because work and basic housekeeping and mere survival take precedence. On good days, I sometimes forget to be careful, and pay for it on bad days. And, readers, I know you’ve paid for it, too.

No, I’m not philosophical about pain. I can never pretend it opens doors, or enhances empathy, or makes my world a richer place. Mostly, it just makes every little thing I do harder and more complicated. It turns an organized, driven person into an unwilling canceller of plans. I’m nothing if not adaptable, though—thanks blindness—and I’m slowly learning to count those spoons. I’m learning strategies to keep the pain from taking over my life. I’m becoming more accurate in measuring my energy levels and prioritizing what really matters.

In the meantime, I ask for patience, not only for myself, but for everyone you know who lives a life in pain. No, we’re not always fine, and no, we can’t always tackle what needs tackling.

But we love you. We’re trying. We’re playing the worst of all juggling games, and we are so, so tired.

But by God, we’re trying.

 

In Defence Of “Internet” Friendship

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“So, where did you meet your friend?”

“We used to post to the same forum, and–”

“Oh…so not, like, a friend friend.”

“A friend friend?”

“You know, like a…real friend. Someone you actually know.”

Friendships forged through online interaction have gained considerable legitimacy since I was a wide-eyed teenager first experiencing the internet, but it’s dismaying how often online connections are still casually dismissed by people of all ages. Apparently, there was a top-secret, authoritative friendship conference that resulted in an unofficial friendship hierarchy, which influences the way friendship is viewed by everyone ranging from seniors to high schoolers.

According to this mystical hierarchy, you can’t measure a friendship in love, but in geography. If you only see your childhood friend once a year for a quick coffee and cursory catchup, that still ranks higher than an “internet” friend whom you haven’t met in person but with whom you communicate daily. Friends who live across the street usually carry more weight with people than a friend who lives across the world, regardless of intimacy, frequency of communication, and overall satisfaction derived from the friendship. (This also applies to romantic relationships, as I learned to my immense chagrin while dating men I’d met online.)

Besides the fact that I find this arbitrary standard inflexible and anachronistic, I also feel it comes down heavily on disabled people, who seem to have an especially large number of online friends. Anyone experiencing loneliness, isolation, and/or a lack of conventional social opportunities can benefit from online social networks. Reducing internet interactions to something pale and second-rate targets a population that is already marginalized. While many disabled people can and do seek social opportunities within their geographical sphere, the internet is an enticingly level playing field where the experience is smoother and the supportive communities are numerous.

My isolated childhood remains a living advertisement for the value of online friends. I was an introspective soul who struggled to make friends in traditionally-accepted ways, so internet social circles were far easier for me to embrace. Online, I didn’t have to be the awkward, introverted blind girl. I could talk to people who were older and wiser than me, share resources with fellow blind peers, and enjoy a sense of social freedom that wasn’t present in my small-town ecosystem. I treasured the offline friends I did make, but rural life didn’t offer the diversity and sense of belonging I found online.

Now, as my life becomes busier and my chronic pain limits my social activities, I appreciate my supportive online network of disabled and non disabled friends more than ever. The love, encouragement, assistance, and companionship they offer are as real and meaningful as anything provided by my equally-adored offline friends. As my heart breaks with the death of an online friend’s husband, and soars with joy at another online friend’s success at work, I do not doubt the gravity and significance of friendships conducted and sustained via the internet.

My internet friends are indeed “real” friends. When they are troubled or grieving or frightened, I comfort them. When I need a friendly ear in the middle of the night, there is always someone to call. My online friends send the best care packages, letters, and virtual (but no less heartfelt) affection. We pay astronomical amounts to visit each other, and make memories we cherish for years. We assist each other financially, emotionally, and spiritually. My online friends may not be able to drive me to an appointment or hold my hand when I’m ill, but they can provide love, advice, compassion, empathy, and laughter.

Never let anyone disparage your online friendships. The internet is a fickle medium, and you may certainly find dangerous, duplicitous people there–people whom you will befriend and later delete from every social network, wondering why you were ever naive enough to trust them. More often than not, you’ll find people who are excellent friendship material–people who will fuse your happiness with theirs and do everything in their power to enrich your life. Whatever people say, however much they scoff, appreciate and cherish the friends you make online, and always measure your relationships in love and respect, not geography and popularity.

4 Sources Of Functional Illiteracy That Technology Can’t Fix (Yet)

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Most blind people are perfectly literate. We may need screen readers and/or braille dots to do it, but most of us can read as well as any sighted person. Further, much of the reading material that was once unavailable to us—magazines, newspapers, pamphlets—can be accessed online. It’s much easier to be a bookworm in 2016 than it was in, say, 1995. The world of the written word is, more often than not, accessible now. There will always be exceptions, though, and those unfortunate little exceptions can conspire to create a lot of grumbling, at least in my life. You see, no matter how accessible the world becomes, blind people will remain functionally illiterate when it comes to…

1. Signs

Signs: helpful little things, which do a lot more than indicate street names and business establishments. GPS and a healthy knowledge of the city was not helpful to me when I nearly trailed the delicate sleeve of my favourite blouse in wet paint because I couldn’t read the sign on the railing. I’ve nearly ruined a cherished skirt while trying to sit on a newly-painted bench. I’ve slid on wet floors, only finding (and knocking over) the helpful wet floor sign after the fact. (Those really do lend themselves well to being loudly and conspicuously toppled, don’t they?) I’ve tried to use elevators and toilets that were out of order. I’ve tried to walk through emergency exits when there was no emergency in sight. All the many helpful hints signs can provide are lost on me, and it is only the boundless kindness of strangers that has saved me from many an embarrassing mishap. (Thanks to the odd passers-by, I still own both blouse and skirt!)

2. Subtitles and Captions

So there I am, watching some powerful video or other, when suddenly the actors switch language. The nice video editors have thoughtfully provided subtitles, but I’m left feeling totally lost. If I’m lucky, the video comes with description, so at least the describer can read the subtitles to me, though this is quite distracting and really takes away from the flow of dialogue. Mostly, I’m unlucky, and nearby sighted people are subjected to eyelash-fluttering and relentless entreaty until they agree to read me the subtitles. It’s frustrating, and while it doesn’t come up very often—I’ve memorized the Elvish bits in LOTR, so that at least is no issue—it’s a real thorn when it does.

3. Handwriting

No matter how skilled we become at inventing and using technology that can read printed material from menus, books, and photos, I don’t know if we’ll ever progress to the point where the blind can access handwriting. Everyone’s handwriting is unique, some more readable than others, but even the neatest penmanship is essentially inaccessible to anyone who can’t see it for themselves. I’ve only a rudimentary understanding of printed letters as it is, so when someone leaves handwritten notes, or uses fancy calligraphy on a bottle of perfume, I’m left wondering. Reading about how personal and intimate handwritten letters are does not help with morale, either. Excuse me while I go shed a few tears over the fact that I’ll never receive a handwritten love letter. I’ll never even take a Buzzfeed quiz on what my handwriting says about me.
Okay, I’m done now.

4. Packaging

It’s getting easier to read labels on packaging now that we have image recognition apps. If you’re able to snap a clear photo of the object in question, it’s possible to have your smart phone rattling off the information in seconds. This assumes you, unlike me, are any good at taking good photos on the first or seventh try, of course. No matter how intelligent the technology, no matter how clear the photo, no matter how strong your desire to read the packaging, however, the fact remains that some companies just don’t make it easy for us. The print on some items is so miniscule even fully-sighted people struggle to read the finer points. Try reading an expiration date or ingredients list without a microscope. And, if you can find and read the instructions without five minutes of fiddling, come talk to me. It would take less time to read a five-page forum on how to open that stubborn bottle of toilet cleaner than it would to find the convoluted instructions printed in tiny lettering on the back. Besides, you meet cool new people while trying to open things. If that fails, you can always resort to more eyelash-fluttering, obviously.

I’m glad to report that, as with so many issues, functional illiteracy for blind people is diminishing. We’re able to access so much material online now that the need to read conventionally is lessening every day. I am seldom reminded of my disability when it comes to reading material, and maybe that’s why it’s so jarring when I am. If you become accustomed to accessing something, and are suddenly and definitively unable, it stands out even more sharply for its rarity. Nothing transports me back to childhood faster than having something read to me, and that’s not the type of childhood nostalgia I welcome. My hope is that strangers will stay kind, and friends will stay patient. Just remember, while you’re rereading that piece of paper for the fifth time, I’m just as frustrated as you are.

It’s All Relative

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As I’ve covered over and over, people treat blindness like a life sentence, complete with misery and woe. It’s not an easy life, there’s no doubt, but it’s not a sea of bitter suffering, either. The misconception that my life really is that burdensome, though, tends to dissuade people from sharing their own suffering with me, as though my disability renders their own struggles meaningless by comparison. Even those who are close to me, and know full well that my life is mostly happy, need occasional reminders that they are free to share their problems with me, no matter how minor they might seem next to mine. Just the other day, my sister was about to tell me about something that was troubling her, when she stopped mid-sentence: “I feel so guilty! My life’s so easy. You have it so much harder. What am I doing complaining?” I took that opportunity to reiterate that everyone’s situation is different, and that pain is relative.

We all have unique issues to deal with, and what might be an insufferable load to carry for one person is but a light affliction for others. A problematic work situation might bother me less than someone else because I’m so grateful just to have a job in the first place. Chronic pain, however, is a thorn in my side, while others handle it with grace and pluck.

I, like so many others, had to learn the hard way that those with the hardest lives are the most willing to listen to my own difficulties. They give the best advice, and often provide welcoming ears and broad shoulders. Since I am so well acquainted with trials and tribulations, the last thing I’d do is devalue someone else’s. I’d look with shame and scorn on someone who tried to use blindness—or any disability, really—as a way to dismiss and silence another’s feelings. No amount of personal pain should make light of another’s. It’s worth knowing our limits, and being candid when we cannot be there for someone else right at that moment, but we must keep life in perspective. We are here to support one another, after all, and insisting that my blindness, mental illness, and chronic pain somehow invalidate the complaints of others is not only ludicrous—it’s dangerous and supremely selfish.

So, if you ever find yourself shying away from unburdening yourself on my shoulder, remember that it’s all relative, and that my pain has nothing whatever to do with yours. All it ought to do is create deeper understanding between us, and it demands that I show the same compassion as others have shown to me. Unburden away!

“Why Are You So Angry?”

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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?

Believe Me: There Are Worse Things

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I’ve often observed that people react to blindness as though it were the worst fate they could possibly imagine. Of course, for some it probably is (though I do wonder how good their imaginations really are). Sympathy (sometimes misplaced, sometimes welcome) abounds for visible disabilities like deafness, blindness, paralysis and so on. What we lack, though, is compassion for those with invisible disabilities–and they may be the ones who need it the most.

I’ve always been blind, and most of the time my life has still been full and happy. But I carry heavier burdens, too—burdens which aren’t easy to see. Among other issues, I suffer from chronic tension pain, migraines, and mental illness. Unless you come upon me walking out of a psychiatrist’s office or holding my head in pain while I throw up on the sidewalk, you won’t know any of this simply by watching me go about my day. Blindness causes me to suffer in highly visible ways; it’s hard to miss it when I trip over a chair or smash headlong into a wall. At job interviews, employers become immediately nervous as they mentally catalogue all the problems they anticipate. They wonder about how I will keep up with the workload. They wonder how I’ll navigate the building safely. They wonder whether my screen reading software will be supported by their current systems.

They don’t wonder how I’ll attend work regularly. They don’t wonder how I’ll find the emotional, mental, and physical energy to make it through the day without collapsing. They don’t wonder who will drive me home when I’m too weak and sick to walk unaided. They don’t think about the leave I might need if my mental state becomes too precarious.

They can’t wonder these things, because I don’t go out of my way to reveal them. Some stand behind the policy of full disclosure: get it all out of the way now so that awkward questions and explanations aren’t needed later. Really, though, If an employer won’t accept me because of a relatively superficial disability—one that can be easily accommodated—how will they feel when I reveal far more debilitating disabilities? Let’s face it: having malfunctioning eyes has nothing on being in excruciating pain, or feeling so low that you want to die.

Sometimes, I fear that people will judge me harshly if I divulge too much about my “other” disabilities. I worry that they’ll think I’m crazy, or whiny, or simply delusional. Will they label me an attention-seeker? I mean, I’m blind plus six other issues? When does it become suspicious-looking? I’ve been blessed with many compassionate people in my life ranging from friends, to coworkers, to instructors. They’ve done their best to let me know that I’m okay, no matter how many things are wrong with me, and that I don’t have to feel guilty about what I can’t control. Conversely, though, I’ve had people become frustrated and offended when I cancel plans due to a sudden migraine (it’s not like I plan them!) or bow out of an engagement because I’m feeling too down to even get out of bed. Each time this happens, my first instinct is to blame myself, even when I know better. It’s easy to convince people that my broken eyes aren’t my fault; it’s harder to convince them that I don’t choose to be depressed, or lie abed all day in pain. Some of them won’t say it outright, but it’s clear as day that they doubt me. I can’t articulate what it’s like to know that it is only my least debilitating disability that people will feel any empathy for. I don’t need help across the street as much as I need a sympathetic ear and maybe a hug.

The pitying sighs get to me after awhile, partly because I don’t need them (I get along fine, thanks) and partly because they are so misguided. I don’t want a pat on the shoulder because my eyes don’t work; they never have and they probably never will. I don’t need them in order to live contentedly. What I do need, though, is energy, will, and strength. My invisible disabilities strip all of that away on a regular basis, leaving me to struggle along in the wake of emotional and physical suffering.

Now, before I go any further, let me make it clear that I’m not saying that blindness doesn’t have its downsides. I’ve done little but write about them for the past few months. I’m also not trying to run a fishing expedition here: I’m not claiming that everyone should begin pitying me for something other than blindness. Ideally, I don’t want any pity at all. But considering the ample sympathy that is heaped upon those with visible disabilities, it would be nice to distribute some of it to those whose pain is less evident but no less unbearable.

No, you won’t be able to tell who is suffering from what unless you make a habit of asking people intrusive questions (and we all know how I feel about those). But if someone comes to you with a clearly visible disability, don’t automatically assume that it is the only battle they’re fighting. For as John Watson so aptly observed, you should always be kind, for “everyone you meet is fighting a hard battle”.

It took a great deal of personal courage to write this post, humble as it is. As I’ve said, I usually take pains to hide these parts of myself, lest I be misjudged or shunned. But as Gregg has taught me, silence is our worst enemy here. If people like me don’t speak up, then no one can understand. You can’t offer compassion for what you don’t know exists. It’s blogs like these which need to be written. It’s conversations like these which need to take place. We need to know that we can be honest. I live for the day when being frank about what I can’t control will not bring me shame or guilt, but relief and a sense of peace.

Take Off the Blindfold

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When I was a child, my peers would sometimes make half-hearted attempts to understand what it’s like to be blind. They’d cover their eyes and stagger around a bit, or they’d borrow my cane and wave it carelessly from side to side, effectively clearing a path of about a half mile radius. It was cute, and always done with kindness, so I never bothered to inform them that mucking about with a stick for two minutes wouldn’t offer them the insight they were looking for. Others tried putting on those silly glasses you can get that are intended to demonstrate different visual impairments (one lens is foggy, the other very blurry, etc.). Again, wearing these goofy things for five minutes was not going to show anyone what blindness is like; all it could do was cause them to trip a few times and, worst of all, pity me even more than they already had. After a few attempts, people would usually conclude that blindness must really, really suck (in some ways they’re not wrong) and go back to exclaiming over how unimaginable it is for them. I was okay with that.

Some people don’t outgrow this notion, though, and pursue more serious (though equally fruitless) endeavors on the quest to understand blindness. People will blindfold themselves for a day or two, trying to accomplish everyday tasks by touch—usually neglecting their other senses in the process, of course. Others would play with the screen reader on my phone, since the iPhone has the capacity to activate a “screen curtain”. With this feature active, it’s impossible to see the screen, and the user must rely on Voiceover, the phone’s screen reader, to operate pretty much everything. The purpose of such a feature is increased privacy for blind users, who can’t defend themselves from prying eyes. Naturally, blind and sighted alike thought it would be interesting to use this feature to illustrate what blindly operating a phone would be like. This bizarre idea was dubbed the “screen curtain challenge” … and it made me crazy.

First of all, it’s ludicrous to believe that closing your eyes or blindfolding yourself for a day (or even a week) would give you more than a glimpse into what my life is like. If you have always been able to see, then you won’t have any of the skills or instincts I’ve picked up over twenty years of being without sight. Your brain does not know how to use sound to find doorways, touch to distinguish brailled letters on a page, or smell to navigate a cafeteria. Your senses pick up the same things mine do, but your brain doesn’t know how to attend to all that information. You are so accustomed to leaning on your sight for everything (not a criticism—it’s how you’re wired), that the subtle nuances I rely upon for everyday travel will be utterly lost on you.

Second, even if you could momentarily experience what it’s like to travel as a blind person (or indeed navigate a phone like a blind person), nothing but years of experience will enlighten you as to the nature of the psychological and sociocultural background of someone who has either been blind from birth (as in my case) or lost his or her sight. I won’t go so far as to claim that it’s a different world; my aim is to build bridges between blind and sighted, not isolate us further. I will say, though, that the emotional, mental, and physical experiences we accept as part of our daily lives will be totally unfamiliar to someone who has always been able to see. This is probably true of just about any disability, though I haven’t the authority to say for sure.

By encouraging ideas like the “screen curtain challenge”, we are shortchanging both blind and sighted people. Blind people, because the sighted expect that they know how we feel after a few hours of blindfolding themselves. Sighted people, because they cannot possibly be expected to figure out things like screen readers in just a day or two. After all, blind people had to learn to use their ears, and fingers, and noses; we weren’t born with a handbook in our brains. We had to figure all this stuff out, and sometimes it takes a lot of dedication to master certain skills. So how can we expect sighted people to get an accurate picture of what our lives are like if they don’t have the same advantages (or disadvantages) that we have?

If you want to understand us, talk to us. Ask us questions. Try to see (ha ha) things from our perspective, all the while accepting that you’ll never get a comprehensive picture. Until technology develops to the point where we can experience each other’s thoughts and memories, let the curtain stay where it is, take off your blindfold, and for God’s sake put that cane away before you put someone’s eye out!
P.S. Thank you for trying so hard. We know you mean well, and most of us want to understand you, too. Let’s talk.