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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Backhanded Compliments and the Tyranny of “Nice”

Many children learn early on that their smallest accomplishments are cause for cheers, applause and glowing social media posts. When you’re very young, your every milestone and every “first” are worthy of celebration, and with good reason. There’s nothing wrong with praising a child for walking well or pouring drinks with accuracy. For most people, this trend eases and finally stops, and they start earning praise for more impressive stuff like finishing a degree or landing a great new job. It would be pretty weird to keep cooing and cheering over an adult who can navigate their own home without guidance and pour coffee independently, yes? You’d be mortified if someone seemed surprised that you, a fully-grown adult, were capable of essential daily living tasks, right?

Right?

Sadly, an awful lot of  very well-intentioned people appear to have missed that memo—the one that says admiring someone’s basic skills stops being cute when they’re all grown up, and that disability is no exception to this rule. It is no less embarrassing to hear “Wow! You handled those steps so well!” or “You got your own coffee!” when disability is involved. While some of us do work harder than the average person on cultivating everyday skills—some of us very hard, in fact—drawing attention to our prowess can feelmore patronizing than validating. I don’t speak for everyone, which is the caveat I always mention at this point in a post, but I can say with confidence I do speak for a very large number of us.

Look, I get it: you want to say something nice, make someone smile, acknowledge what you consider to be exceptional talent or strength or perseverance. Maybe you feel inspired by the person you’re complimenting, or perhaps you can’t think of a better way to break the ice. It could be that you’re genuinely curious about how they get things done given the barriers they face, or you’re anticipating they’ll need help later and you want to develop rapport in advance. You’re a nice person, just trying to do a good deed for someone else. I truly do understand.

Keep this in mind, though: a great many times, being kind is preferable to being nice. Emotions tend to run very high in these types of situations, because no one likes discovering their attempt to make someone happy might be backfiring. Nevertheless, I do believe most people want to treat disabled people kindly, and kind people don’t make others feel condescended to or humiliated, even with the best of intentions. Kind people consider context, and compliment accordingly. And kind people don’t let “I was just being nice” outweigh any harm they might cause.

You may be shaking your head, feeling down on yourself because you know you’ve messed up this way. I beg you not to take this personally, however. In my experience, just about everybody makes this mistake at least once. It’s not isolated, and it’s not rare. Even if you actually have a disability, you have probably done this to someone without being aware of it. Proximity to disabled people should never be mistaken for immunity, and I’d be hard pressed to think of someone who hasn’t fallen into this trap. I’ve certainly spent some time there myself, and I ought to have known better.

So, here’s a simple test to help you. Next time you plan to praise a disabled person for a specific skill, ask yourself whether you would feel awkward if that compliment were directed at you. Would it make you uncomfortable if someone patted you on the back for, say, picking out your own outfit? Might it be a little off-putting if someone congratulated you for knowing where the staff kitchen was, six months after you started working in the building?

If you determine that the compliment you want to offer would make you feel pretty good about yourself, go ahead, as long as it’s contextually appropriate. Feel free to tell me if you like my writing skills. Tell my designer friends they have excellent creative instincts. I have no doubt my partially sighted partner would love to hear that you enjoy his cooking. These are all respectful compliments, and there’s no backhanded “You do well … for a disabled person”subtext attached. Further, you avoid giving the impression that people whose disabilities mean they do need help with basic tasks are somehow inferior to people who are able to do those tasks independently. After all, an adult who needs assistance with grooming, for example, is no less worthy for needing that help.

On the other hand, if the compliment you’re considering would feel insulting or at least bizarre if directed at you, that is your cue to pause. Think about whether you might be causing more discomfort than goodwill, and be mindful of who is around. Being complimented on my travel skills when I’m crossing the street is one thing. It’s distracting and unnecessary, but I’ll survive. In a professional setting, however, it’s likely to make other people notice me not for my solid work ethic or valuable skills, but for a disability that does not and should not fully define me.

Don’t be shy about telling people what you admire about them. Nothing in this post is suggesting you have to conduct a full-scale cost-benefit analysis every time you make a positive comment around a disabled person. I’ve received quite a few thoughtful compliments in my life, and while I’m not as graceful about taking them as I’d like, they’re always welcome. I do ask that, in future, you run through that simple test in your mind, and practice being more deliberate about how you dish out praise. Many, many of us will thank you, if only inside our heads.

Oh, and if you simply want to know how something gets done, or how a particular barrier is managed? Google your question, or ask. If we’re not crossing an intersection or trying to do our shopping, most of us are quite happy to answer.