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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You Should Date A Sighted Person, Because…

Anyone with a love life knows full well how much people enjoy meddling in it. Everyone has an opinion about the ideal mate, and by God, they want you to hear about it. These opinions are sometimes sound enough, but they’re still just opinions, and not necessarily reflective of your needs, preferences, and values.

I, like many blind people, have heard all kinds of opinions about how I ought to manage every aspect of my life, down to which mobility aid I should use and how passionately I should desire a cure. When I began dating my previous partner, who happened to be blind, people were quick to loudly and emphatically express the opinion that I should choose a sighted mate, because…

“A sighted person can take better care of you.”

We begin with the pervasive assumption that blind people can’t take care of ourselves. Some simply mean that we struggle more with everyday tasks (which is often true). They point to the driving issue: wouldn’t it be so nice, they suggest, if your partner could drive you everywhere? They could come pick you up when you get lost, or help you shop so you wouldn’t need to bother the customer service people, or find your keys when you drop them, or walk with you so you don’t get hit by cars.
While some of these arguments might have merit, I don’t particularly need taking care of, at least not to the extent to which I’d need a live-in caretaker. Besides this, I don’t think most sighted people would appreciate a mate who selects them in whole or in part because they could act as caregivers. Even if a sighted person got off on that idea, I’m not interested in being someone’s source of validation. No thanks.

“A sighted person makes more money.”

Okay, so there’s no denying that many, many blind people find ourselves chronically unemployed. The job market is more limited and less welcoming. Despite diversity quotas and affirmative action, it’s still difficult for us to land and keep jobs, even when the economy is booming. So, technically, choosing a sighted mate would mean that at least one of us would have an easier time finding gainful employment. But…
Blind people can still work. We still establish and maintain high-paying, fulfilling careers. We attain the same level of education as sighted counterparts, and are still more than capable of making a living independently.
We’re supposedly past the stage where we believe women ought to have a man so they can be supported financially, so my argument is that, if I can live independently as a single, educated woman, then I can live with a blind guy, whether he is or is not rolling in it. Again, who would want a disabled mate who chose them because of their employment prospects? Seems a little shallow, no?

“A sighted person will keep you normal.”

Blind people, like many other disabled populations, are usually perceived to be alien. Sometimes, we are socially awkward, hesitant, and even a little sheltered. Some of us never outgrow common blindisms, like rocking, eye-pressing, or hand-waving. These are techniques we use to self-stimulate as children, and while some of us left these things far behind as we entered the adult world, others have more difficulty eliminating these habits. Beyond these very specific issues though, blind people are about as normal as any others, but sighted people don’t always believe this. They think of us as having our own little tribe, and encourage us to mix with sighted people to dilute the blindy weirdness as much as possible.
So, the logic follows that, if we date sighted people, we’ll be forced to stay as normal as possible to retain our attractiveness. There will be no room for letting things slide, or sinking to a lower standard of behaviour. Blind people, after all, encourage each other to act strangely, and don’t value normal human interaction, right?
All I’ll say to this is, there are a hell of a lot of strange sighted people in this world, and most of my blind friends are as normal as can be. Besides, I’m capable of befriending someone without adopting their exact lifestyle and mannerisms. So, even if I dated the wackiest blind guy alive, I’d probably be the same, normal-ish Meagan. (Hey, why are you laughing? Stop that. I can be normal! Seriously!)

“A sighted person is more of a catch.”

So, so many people are under the impression that I was settling by choosing a blind mate. I chose him because he was attractive and compatible with me; I did not settle for less by dating him. Sighted people are not better mates by default, even if they do have an easier time getting a job and are able to drive me to an unfamiliar place. My current partner, who is closer to being fully sighted than he isn’t, is also attractive and compatible with me. I selected him for the same reasons as my blind ex, and benefit far more from his sweet disposition and kind personality than from the various perks his vision can offer me. My relationship with a blind mate failed for reasons independent of disability, and my current relationship thrives for reasons unrelated to my mate’s sight.


If you liked this post, drop by next week for its companion piece, in which I discuss the reasons we should only date fellow blind people (and why they’re totally ridiculous).

I Need You To Need Me

While on a camping trip one summer, my cousin came over to my chair, plopped her infant son into my lap, handed me some grapes to feed him, and headed off to do something or other with her hands. I sat frozen for a moment, taking this in. For the first time ever, someone automatically assumed I’d be able to look after their child while they were busy. I felt so normal and useful and…human. Never had I been allowed to cuddle a child without some concerned sighted person hovering anxiously at my elbow, offering to take them back after half a minute. Never had anyone trusted me to babysit. Never had anyone asked me to so much as change a diaper. Here I was, at long last, snuggling a baby like I was a normal person or something.

Disability is a package deal, and there’s no point denying it. Along with all the obvious stuff, like the inability to accomplish certain tasks, there is the dynamic in which you are receiving help and support more often than you give it. With notable exceptions, blind people are all struggling with that dynamic with varying degrees of success. I’m sad to say I’m one of the not-so-successful ones, though I’m trying mightily hard.

All relationships require interdependence—healthy ones usually mean the ratio is equal—and that’s okay. Humans should need each other; we’re social animals and supporting one another is what social animals do (when we’re not tearing each other to pieces over competition for resources, that is). This raises an important question, though: how much is too much? At what point does an imbalance of dependence in any relationship become unhealthy for both parties? I’m not sure that question has a definitive answer, but what I do know is that most blind people seem to have at least one relationship that is slightly unhealthy simply because of increased dependence.

Worse than this, though, is the common perception that we need more help than we actually do. Many people assume I need help with just about everything, but this is simply not the case. What does this misconception lead to? Well, many things, but the one I’m zeroing in on is the fear of “burdening” us by asking us to help out. Whether we’re talking about household contributions, childcare, or party planning, it comes to the same thing: people are loath to need us in any way…and we desperately want to be needed. Being depended upon is excellent for confidence and general mental health, so it’s imperative that we find a place of usefulness within our relationships.

The main issue is circular reasoning: we’re incapable because we’re never allowed to learn new skills, and we can’t learn new skills because we’re incapable. It’s a tough cycle to break, and can involve growing pains on both sides. We require a degree of trust from sighted people. We’re asking them to overcome their anxiety and trust us with difficult tasks. They hate to give us responsibility, thinking we either don’t want it or can’t possibly manage it on our own.

To add icing to this distressing little cake, (I’m hungry, and hunger always justifies bad metaphors), we end up proving people right because we are awkward and inefficient while learning something new. Instead of treating this as normal and letting us get on with it, people jump in and finish tasks for us because it’s quicker and easier. So, we never get to learn, and they never get to lean on us.

It saddens me that I have so few memories of being trusted with complex and vital tasks, and I’m sadder still that those few memories stand out in my mind with such clarity. I should not be ecstatic over being allowed to hold and feed an infant without anyone hovering over my shoulder. That should not be an aberration, and it definitely should not be as fulfilling as it was. Times like that make me realize how starved I am for the feeling of usefulness. I want to matter to people beyond, say, my ability to sing them a pretty song or act as a sounding board for their problems. I’m sick of being given busywork, or being ignored by other students because they think I can’t do the same work they do. I’m sick of being passed over because of the mythology surrounding blindness. I’m sick, most of all, of feeling helpless.

At the moment, I do feel appreciated for being a good friend and a good writer, but my friends don’t call on me when they need babysitting done, or when they need house-sitting done, or even when they need food to be brought to a gathering. More than once, I was told not to bring any food to a party, only to discover that everyone else had been asked to bring something. I am capable of cooking, even if my repertoire isn’t huge, and I’m more than able to just go out and buy something. The Martha Stewarts of the world might clutch their pearls in consternation, but most people wouldn’t care.

The only remedy I’ve found is to be pushy about what I can do, and to be honest about what I can’t. I barge my way into a situation where I think help might be needed, insisting I would like to pitch in and not leaving people any room to protest. I’m adamant about assisting where I can, and also more insistent when it comes to learning a new skill. After numerous discussions with blind people from all walks of life, I have concluded that this is the only way forward for us. I hope that, in time, things will get better. Until then, I ask only that sighted people open their minds and allow me a way in. I can be useful, too.