Weightless, Wanted, Worthy

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.

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The Man Who Taught Me To Fish

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 strong, 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 something as mundane as, say, the location of straws at the Starbucks near my apartment—I experience a moment of undiluted triumph. Often hesitant and 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 where I am is worse. Even so, when 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.” Surely, 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 astounding patience and enthusiasm, I realize I’m feeling just a little less blind.

* * *

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 truck, an earthworm, a bird’s nest. New kittens were placed delicately in my eager hands, and I was free—encouraged, even—to hammer in a few nails and 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 useless 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 incredibly 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 book’s diagram. I think this will make way more sense for you. You’re not dumb; I know you can understand this. See?”

Sure enough, as he points out each facet of the cube, telling me 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 surrender or self-doubt. On this journey, there is no room at all for giving up. 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 secret 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 most unwilling 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 excessively disabled. I was not permitted to wallow in self-pity or allow anyone else to feel pity, either. Through patience and determination, my father convinced me that I am strong and capable—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.