faith

“You Got a Permit for Those Feelings, Ma’am?”

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When we think about gaslighting, we tend to focus on calculated, premeditated abuse, carried out over time for some nefarious purpose. We rarely think of it as something unconscious and unintentional — something we do to ourselves and each other, in some cases with disturbing frequency. Gaslighters are vindictive, manipulative bullies. Gaslighters aren’t decent, well-intentioned folks in widespread, shared denial. And gaslighters certainly aren’t members of marginalized communities who have learned to second-guess their perspectives. Perish the thought!

I’ve generally thought of gaslighting as something that rarely happens to me, something other people deal with, until a recent moment of public humiliation at the hands of well-intentioned strangers brought me up short.

Two recruiters for some sort of club approached my sighted friend and me, diving straight into their pitch without preamble. My friend grabbed a pamphlet, but I was totally in the dark about what was going on and who these people were. They spent the next few minutes talking about me as though I were an engaging art installation.

“Can she speak?”

“She can speak, right?”

“Our club is for, you know, all individuals.”

“Even she could participate in this, I think!”

“She’s okay, right? She can…”

“I know you’re guiding her today, but we could work something out…”

“And she really can speak?”

During this onslaught, I struggled to get my bearings while one of the strangers held some food item, a bag of chips as it turned out, right under my nose without explanation. I kept interjecting, trying to redirect their attention, to demonstrate my ability to have this conversation for myself, but nothing I said got through to them. Meanwhile, my poor friend stood there, horrified but unable to extricate us from the situation.

Finally, my attack of politeness paralysis lifted: “Excuse me but we really need to go.”

As we power-walked away, my friend swung between apologizing and expressing shock.

“Did that just happen? I am so so sorry! I didn’t know what to do. Did that seriously just happen?”

I assured her there was nothing she could have done differently and thanked her for acknowledging my own shock and embarrassment. We parted ways, and I was preparing to shove this incident into my trusty ‘shit happens’ folder when I realized something at once forgettable and bizarre: I had thanked her for being upset about this. The first articulate thing I’d thought after it happened was, thank God I had a sighted person with me. I was hugely grateful to someone for whom this sort of treatment was an anomaly, not an inevitability, the way it is for me. I was relieved that she’d been there, with her working eyes, to assess my feelings and find them valid.

Why?

This realization crystalized further as I sent a message to a blind friend I knew would understand.

“The sighted friend I was with was more upset than I’ve ever seen her. That gave me permission to be, I guess. I dunno. I’m still shaking.”

There it was, in plain language. Somewhere along the line, I’d become so distrustful of my own perceptions of reality that I needed validation, sighted validation in particular, before I’d let myself react. What was this self-diminishing nonsense, and when had it started?

If I’m being truthful, this subtler form of gaslighting began early, and it came from just about everywhere. Remember those decent folks I mentioned earlier? The ones in widespread denial? I believe I learned this pattern, however unwittingly, from kindly people who couldn’t bear the idea that they could do real damage without even knowing it, who clung stubbornly to the belief that intentions trump results, always.

How many times had I been encouraged to be extra patient, unfailingly gracious? People just don’t know what to do with me. How to talk to me. How to work with me. How to live alongside me

How often had I been reminded, by sighted and blind people alike, not to be too hard on people because they didn’t know any better? They’d never met someone like me before. Not everyone has read my blog. They didn’t mean it. I read the situation wrongly. They meant well. I must have misunderstood.

And how many comments have I heard and read, online and off, asking for sighted validation? Was anyone sighted with you? Did anyone see what happened? Maybe you misheard? Maybe it would help if you could see their faces? Most communication is nonverbal — maybe you’re just not good with social cues? Maybe there was something going on you couldn’t see?

Then there is the gaslighting I have done to myself. Even a sighted person couldn’t have done this, known this, understood this, accomplished this, noticed this, fixed this. I had a sighted person check so I know it’s okay. I need a sighted opinion on this please. I wish I had a pair of eyes to verify this.

Sure, sometimes I misunderstand things, miss out on context, because my eyes don’t work. Sometimes I need someone’s vision: Did this document print okay? Is this picture what I think it is? What’s on my screen right now? Did she look upset or was she smiling when she said that?

But when I get to a place where either a sighted person was there to witness it or it didn’t happen—either a sighted person thinks what happened to me is discrimination or it doesn’t count—something is very, very wrong. And I doubt I’m the only one doing this self-defeating dance.

I should be leaning on all my friends, sighted and blind, for everyday validation, the kind many of us crave when we’ve been through something difficult. I am comforted when people join me in my anger and acknowledge my shame. What my sighted friend did for me that day, standing beside me, getting offended right along with me, was good and kind and helpful.

The wrongness lay in my intense relief that her sight, more than any of my own senses, gave me permission to feel my feelings; that I worried about confiding in too many other friends for fear they’d poke holes and imply I shouldn’t be upset; that some internet commentator would materialize to tell me I don’t get to be offended; that any of this would influence me so easily.

The fact remains that I was there. It happened to me, not a friend or coworker or random internet troll. I should be able to own my reaction and sit with it a while without guilt or undue doubt. I should be able to confide in some friends, take in their support, ignore any advice I didn’t ask for, and move the hell on with my life.

The good news is that I believe I’ve learned my lesson. This incident should have been an annoying blip, not a miniature crisis of faith in my judgment. Speaking of faith, it’s time I placed more of it in my perception, less of it in hidden, well-intentioned gaslighting, and mastered the art of sitting still with what hurts me without picking apart that hurt or trying to explain it all away.

In case my faith crisis is also your faith crisis, here are some thoughts. People will behave in ways that hurt you. Sometimes you will have witnesses; mostly, you won’t. You will have feelings about the things that harm you, like shame and embarrassment and even rage. Some people will disagree with you about those feelings and whether you should experience them at all.

Here’s the wild, subversive, beautiful bit: You don’t have to change, suppress, or deny your feelings. You get to sit with them, express them without questioning their fairness, their reasonableness, their right to exist. Then you get to let them go, and carry on living a kind and gracious life, whatever that looks like for you.

If you want to educate those who hurt you, if you want to cut them some slack or analyze their reasoning or question your reading of the situation, there will be plenty of time for that later. But the immediate aftermath of a painful thing is not for educating or reasoning or arguing on Facebook with your cousin’s hairdresser about whether it was really as bad as you claim. No, immediate aftermaths are for your anger, and your shame, and your frustration with this silly old world.

Put out your gaslight, friend. You won’t be needing it anymore.

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Beautiful Things Are Happening

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I remember the first time I worried I might not ever be okay.
I was fourteenish, embroiled in a toxic not-quite-relationship with an older boy who’d discovered the exquisite pleasure of exploiting my insecurities. I had burgeoning confidence in my potential; I could picture a successful, if difficult, road ahead. But secure, relatively intelligent young girls who are quite sure they’re doing all right aren’t any fun to manipulate, so he began to poke holes in my bright future.
“You really need to be more independent,” was the regular refrain, delivered with tender cruelty I was meant to mistake for tough love.
“It’s a hard world out there, dear,” and “you’ll struggle for sure,” and “good thing I’m here to help.”
I got miffed, all the time. I even pushed back some, when courage was close at hand. On some level, I understood these criticisms were as rich as turtle cheesecake coming from a person who had accomplished less in his 18 years than I had in the four years that separated us. I had a lot to learn, in the blindness skills department most of all, but I was competing at music festivals, getting excellent grades, and managing not one but two chronic conditions without much medical support. I was about as on track as any teenager I knew.
He, on the other hand, was perpetually angry, hopelessly off track, with an uncertain future and a penchant for blaming his disabilities for abusive outbursts and bouts of frightening possessiveness. If anything, I should have been the one clucking with concern, but much as I sensed the wrongness of it all, I let his doubt poison my faith. Faith is there when the odds aren’t favourable, and to be disabled in a harsh world is to live with unfavourable odds. And faith, more than skills and talents and support, has always been the engine of my success for that very reason. I’m convinced he knew that.
In my senior year of high school, that engine had all but stalled. I’d broken all contact with that toxic friend long before, and he had since died suddenly. He could no longer mail me packages I didn’t want, or threaten suicide if I didn’t play nicer, or use social media to stalk me, or email sanctimonious lectures about my tragic inability to take care of myself. But the damage was done. He had triggered a landslide of second-guessing that, helped along by myriad forces in my life, had buried me to the point where all I could do was dread everything – dread university, dread my first job, dread new cities and exciting adventures and fresh mistakes to run with. I still had so much to learn, and I was paralyzed, rather than energized, by all of it.
Depressing, amiright?
Fortunately for us all, this is a new-year-new-decade reflection post, and those have to have a happy ending and a hopeful outlook. Them’s the rules.
The past decade has presented a lot of pain and self-doubt, brought on in many cases by the doubt of others. The pressure to make something of myself—to ‘transcend’ blindness, chronic pain, mental illness, limited educational opportunities, the whole bit—sat smugly atop the self-defeating prophecy that I’d never do or be enough. What was the point in trying?
But it has also blessed me with plenty of people who had so much faith that they couldn’t conceive of me being anything other than enough, maybe more than enough. I’d make mistakes, sure, and fall flat on my face a few times given that stubborn streak running through me. Ultimately, though, I’d pick myself up and keep charging ahead, because that’s just who I am.
“Listen,” one friend said bracingly during one of my late-night fall-apart sessions, “you are going to screw things up sometimes, in the blindness department and in the general life department. You’ll put reds in with your whites and burn hell out of your dinner and at some point you’re going to get really lost in a new place, and all of that will suck.”
“Exactly!” I wailed, missing the point spectacularly.
“It’ll suck, but you’ll wake up the next day and realize that life keeps going. And you’ll discover after a while that trying stuff is messy and scary and you can’t be good at everything you touch. I was embarrassingly far into living on my own before I felt comfortable with my life skills. I survived. You’ll survive too, and then you’ll understand that when someone says ‘you’ll never make it,’ that’s not helping you. That’s not motivation. That’s not love.”
This come-to-Jesus moment came on the heels of another friend getting so sick of my constant self-flagellation that he nearly cried with sheer frustration.
“I swore to myself I wouldn’t sit here and watch you do this to yourself anymore. Seeing you beat the shit out of yourself all the time hurts me, and it’s not my idea of a good time. Cut it out.”
(Some of my friends sure knew how to bring the constructive tough love, wowsers.)
As many of you know, I did end up going to university and getting jobs and doing fine on my own. I learned most of the skills I’d need to do well in the world as a disabled person, as a writer, as a professional, as an aunt and mentor and wife. And at one of my lowest moments, total strangers would remind me that I’m not alone in my doubt and my despair, that if you’re running low on faith you can always borrow someone else’s.
This journey hasn’t been romantic, and I’m still learning to have faith in myself and ask for help when I need it. I’m still suppressing the reflex to put myself down, just so I don’t have to deal with fear and failure head on.
But here is the wonderful, indispensable lesson of the decade: now that I’ve allowed people to believe in me, now that I’ve let their faith rekindle mine, brave and beautiful things are happening.
I’m wide open to another ten years of failures, and to many more beautiful things.

Weightless, Wanted, Worthy

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While reading Martin Pistorius’s powerful book, Ghost Boy, I was struck by a passage in which Martin, experimenting with a body that does not behave predictably, attempts to make breakfast for his partner, Joanna.

I forced the knife downwards, cleaving it to my will as it hit the side of the toast before skittering across the plate and leaving a glistening red slick on the table. I stared at the battered toast before looking at the floor, which was covered in coffee granules and sugar. The butter looked as if a wild animal had chewed it and jam had erupted like a volcano across the table. Euphoria filled me. I’d made toast, coffee was waiting in the cups, and the water had boiled—Joanna was going to have breakfast. I banged a spoon on the table to let her know I was ready, and a smile spread across her face as she walked in. “How nice to have breakfast made for me!” she said.

Some might interpret Joanna’s enthusiasm as pretense. As you read through the book, you quickly discover that while Joanna is fully aware of the many barriers Martin faces, she supports his efforts to try new things, even when they end in an imperfect, sticky mess. Martin and Joanna’s marriage is founded on genuine respect and validation, with no suggestion that she is giving anything up to be with him. Rarely have I seen such a beautifully balanced framework, where limitations are acknowledged but never allowed to overwhelm the entire structure.
Naturally, reading about Martin and Joanna got me thinking about my own relationship. My partner has a disability of his own, but it is invisible, and comes up so rarely I sometimes forget it exists at all. We live much like a couple in which only one party is disabled, and we both had to adjust to the different things we need from each other to grow and be happy.
In addition to needing all the conventional things, like love and companionship and the space to laugh with someone in the face of life’s trials, I also crave specific validation from my partner—the validation that says, “I acknowledge that you are disabled, but you are no less complete for it.” From day one, even as I walked him through my various barriers and how they might be an issue for him, he treated me like a whole, autonomous person, and nothing less. If I ever feel inadequate or out of place in the context of our life together, it is my own anxiety talking, not his. Again and again over the past few years, I have been caught off guard by the simple, implicit trust this man places in me every day, without thought and without a hint of charity. Strangers on the bus might wonder what I’d do without him, but he frequently asks me what he’d do without me.
What does this look like in practice? Mostly, it’s an intangible thing—more felt than seen, and usually unspoken. I can point to scores of small things that add up to a larger pattern, and that’s how I can best explain the dynamic.
For example, he asks my opinion on things, with the assumption that of course I’ll have one, and of course it’s as valid as anyone else’s. He doesn’t bombard me with questions about how “blind people” feel about X Y or Z. No, he asks about the best way to install a showerhead, or which ingredients would enhance a new recipe, or what political news of the week is most relevant. Far from assuming I mustn’t be knowledgeable about anything outside the realm of my disabilities and personal interests, he assumes that I am likely to know a little about a lot, and if I’m not sure, I’ll be straightforward about that. I don’t always have opinions or suggestions, but it is so novel and so satisfying to be asked as an equal—as someone who knows things and whose judgment can be trusted. It shouldn’t be so remarkable, but I think most disabled adults would agree that unless the topic is disability-related, our voices are often overlooked.
Like Joanna, my partner doesn’t expect perfection from me, but does expect me to experiment, and won’t ever shame me for the results. He would rather I demolish the kitchen cooking breakfast than have me avoid cooking altogether in case something goes wrong. It’s not that he humours me or enjoys watching me struggle. He simply expects me, as his partner, to contribute where I can and shed my irrational insistence on perfection. If I get hopelessly lost while attempting to conquer my travel demons, he’ll still be sincerely proud that I was brave enough to try, without resorting to empty praise or minimizing my mistakes.
As I’ve noted several times on this blog, living well with disability requires a great deal of self-confidence—or plenty of skill at faking it until you make it—because that confidence won’t come easily from outside yourself. If you don’t have faith in your abilities, you may struggle to find someone else who does. The less you feel you have a right to your place in the world, the less welcoming the world seems to be. While I’ve cultivated my own strong sense of self-respect, I’ve discovered it’s far more bracing when my partner reflects it back at me. I am fortunate indeed to make my home with someone whose faith in me exceeds my own, never hesitating to remind me I am whole.
I’ll return to Martin’s words, because he put it so beautifully: “I’ve lived my whole life as a burden. She makes me feel weightless.”
I, too, have lived my whole life worrying that I am too much like unwanted luggage. But he, together with so many others, makes me feel weightless, and wanted, and worthy.
From where I’m standing, there is no greater love than that.

The Man Who Taught Me To Fish

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Being disabled means having your competence questioned at every turn. It means accepting that your intelligence, your autonomy, your very worth are always up for debate by those least qualified to make judgments. It means, therefore, that you must be resilient, whether or not it comes naturally. Finding this strength, this essential self-reliance, can come about in many ways. For me, one of the fortunate ones, the tools for independence were introduced early and often.

* * *

We kneel together on the thin carpet of my bedroom. My favourite cassette tape, a collection of fairytales, is in my small, tentative hand. Speaking softly, my father explains how to slide the tape into the player—gently, now—and places my fingers on “play.” As the opening music rings out and understanding of my new skill breaks over me, I can only smile widely enough to split my face, thinking dreamily of how delicious growing up can taste. It’s a small step, playing my own audio books, but the joy lingers.

* * *

Each time I learn something new, even mundane things like the location of straws at the Starbucks near my apartment, I experience a moment of undiluted triumph. Rarely overconfident, I am not the archetype of success some would wish me to be. Instead, I skirt the gaps in my knowledge and abilities with an unthinking ease bolstered by years of practice. While my blind peers pursue adventure and hone new skills for the sake of doing so, I hold my shameful passivity close to my chest, owning what is necessary and burying everything else. Showing weakness, I have learned, is a grievous sin; admitting I’m comfortable with slow progress is worse. Even so, as I break this ancient habit and push my boundaries, I feel a thrill that once coloured each day of my childhood, when there was someone there to rejoice along with me. Of course he would still do so, if I called him on the phone and said “Hey, Dad, I learned a new route today.”. My cheerleader is still waiting in the wings, should I ever need him.

* * *

We are traipsing through an amusement park in the sweltering summer heat. I am sulky and bored in that particular way of children. I’ve had my fill of rides and novelty food; I am ready for familiar surroundings and a good book. As I prepare yet another whiny entreaty—let’s return to the car, get a cool drink, pull out the Harry Potter novel I wish I was reading—Dad pulls me aside to examine a life-sized, intricate statue of a cow. It occurs to him that I’ve never touched a real cow before, despite having driven past them a hundred times. As he runs my hands over the statue, describing each part with patient enthusiasm, I realize I’m feeling just a little less blind, a little more curious about the world around me.

* * *

The process of spontaneous discovery was a common feature of my childhood years. Seized by inspiration and vicarious wonderment, Dad would pause and encourage me to notice a rhubarb plant, an earthworm, a bird’s nest. New kittens were placed delicately in my eager hands, and I was permitted, even encouraged, to hammer in a few nails or help paint a wall. If it captured my interest, it was mine to touch and try and learn. Assumptions about safety and propriety and ability were seldom made. Mine was a world of discovery, because Dad had no doubts, no reservations, no unreasonable fears.

And so, I had no fears, no doubts, no reservations of my own.

* * *

“I’m just bad at math, okay? I’m stupid, I guess.”

Salty tears stain the Perkins brailler I’m using to hammer out surface area calculations. Slightly flummoxed by all the tears, Dad makes a joke about me rusting the metal brailler if I don’t stop crying. He coaxes a grudging laugh from me, but the levity doesn’t make the work any easier. I have sat before this abstruse tactile diagram of a cube for literal hours, convinced that I must be less intelligent than fellow students, all of whom had exclaimed that this unit was simple. I, a star student then, had trouble accepting this reality in which I was in need of help with my homework.

I look up to find Dad placing a wooden cube in my hands.

“I went to the shop and made you some shapes. I think your problem is that you’re not understanding the two-dimensional diagram. I think a 3-D model will make way more sense to you. You’re not dumb; I know you can understand this. See?”

Sure enough, as he points out each facet of the cube, demonstrating how they correspond to the ones on the page, something clicks into place. Suddenly, I’m finding surface area as easy as everyone else had, all because someone was able to teach in a way I could grasp.

I am not stupid after all, or terrible at math; I am just blind—blind, and very bad at deciphering diagrams, apparently.

* * *

Blindness has taught me to work more diligently than others. In my slow, steady climb, there is little room for self-doubt–no room at all for surrender. When everyone else seems poised to give me an out, to say, “Well, Meagan, you tried your best; you can go home now…” I am compelled to reply in the same way each time: “Never.” The stubbornness and refusal to concede, (the very qualities that justly infuriated my father while I was growing up), are the sources on which I draw for support through each new hurdle.

When voices say, with stolen authority, “Meagan, you’re blind. You will never—“ another voice pipes up, strident even in its uncertainty: “Watch me.” Much as Dad must have cursed my inflexibility, I think he has grown to respect its power. He should, for I believe he is the one who gave it to me.

Dad taught me to fish, of course. I’ve been fishing since I was so small that my rod had to be tied to my life jacket. He taught me to cast and jig and reel in even the feistiest ones. He also taught me to respect the fish, never causing undue suffering or taking more than my share.

But, as you may have guessed, he taught me to fish in other, less obvious ways. His unwavering faith in my personal abilities meant I was rarely allowed to think of myself as incapable. Disabled, sure, but never incapable. I was discouraged from wallowing in self-pity, or inviting anyone else to feel pity, either. Through patience and determination, my father convinced me that I am strong—not constantly, but often enough to succeed. To this day, my dad is the person I think of first when I prove to myself, once again, that blindness doesn’t have to ruin my life or my career or my dreams. Whenever he describes something new or lights a much-needed fire under me, I remember and honour the joy of learning to fish—because at the end of the long, hard day, all I have is me. I have my father, among many others, to thank for making sure I’m a damn good person on which to lean.
So, thank the people who taught you how to fish, and those who remind you that you still know how. You owe them a lot.

Disability: The Gift That Keeps On Giving?

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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.