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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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.