validation

Finding Your Hive: Longing for Usefulness as a Disabled Worker Bee

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Over the past few years, I’ve been focusing less on sheer survival and more on living in a way that brings me lasting contentment. Common wisdom for such a pursuit most often begins with ‘find your tribe’ sentiments.

Said wisdom did seem to be working well for most everyone I knew. Each time a friend picked up a hobby or clicked with a social group, their general happiness seemed to improve tenfold. Then there was me: phenomenal friends, supportive coworkers, closely knit family, thriving romantic partnership. My social life was thriving for the first time since high school, and loneliness had become something other people suffered. I was even beginning to explore creative hobbies after too much time spent in stagnation. My writing showed promise, and music, that stalwart friend, was a central part of my life again.

So where was the life improvement squad? Where was the revelatory sense of purpose? Where was the click?

Maybe I was supposed to order it. Maybe I’d have to go online and fill out some form and half the fields would be unlabelled and everything would be colour-coded and then the CAPTCHA verification would be inaccessible and maybe I should just have a nap?

Anyway, just as I accepted my destiny as incorrigible malcontent, I found a comfortable niche at a new job. The work I do offers abundant opportunity for individual accomplishment, but there is also a lot of work that’s unglamourous, uncredited and, therefore, quite unpopular. It needs done, and when it’s done well it brings enormous value to the team, but no one likes doing it.

Well, no one but me.

Once I developed a widespread reputation for being the person who’s up for anything, always willing to embrace the ‘hard’ in ‘hard work,’ I felt it — my resounding click. I was useful, and that was just what I’d been looking for.

You see, like many rural kids, I grew up in a culture obsessed with usefulness. There was always work to do, and if there wasn’t, you weren’t looking hard enough. All around me, my sighted peers were making themselves useful mowing acres of grass, feeding livestock, doing renovations, operating farm equipment, changing someone’s oil. You name it, someone my age was doing it.

As for me, I could usually be found unloading the dishwasher or doing laundry while everyone else rushed about doing things I was too blind to tackle. In an environment like mine, if you couldn’t drive, couldn’t see, couldn’t learn purely by observation (no one had time for adapted training, even if they’d known how to carry it out), there was no sugar-coating it: you weren’t of much use. I know plenty of rural blind people learn most of these things by grit or gumption or good, patient teaching—see you in the comments, guys, keep it civil—but for reasons that are numerous and complicated and not at all relevant here, I didn’t.

So, in effect, I spent my formative years knowing I was not very useful, while up to my eyeballs in a culture devoted to utility. As you can guess, that understanding sank deep into my marrow and helped forge who I’d become: A restless, rudderless person who couldn’t work out what would make her truly happy.

Being academically inclined was nice. Being reasonably intelligent was handy enough; that would help me make money later, maybe. My singing brought others joy, even if it wasn’t going to babysit their kids or cook their dinners. But I felt like a defective worker bee in a very busy hive, and no one seemed to know what to do with me.

It took me way too long to realize what I need for true contentment is less ‘find your tribe’ than ‘find your hive’. I’m not wired for attention and I’m not especially motivated by approval. I like working with other people, but community, important as it is, doesn’t fulfill me on its own. As it turns out, finding my people is my nice-to-have, not my must-have. What I hunger for isn’t attention, recognition, or a group of people who ‘get’ me, though I won’t say no to them. Instead, I am the ultimate team player, totally invested in a job well done. I want to have your back, not take your limelight. I want you to notice me for my dependability, not so much for my brilliance, though again: I won’t say no to that either. If I’m competing with anyone besides myself, it’s to see who is most helpful, not who is most impressive. I hunger for the knowledge that because I’m around, doing my best work, someone else’s life is easier.

I wonder, as I write this, whether other disabled people have the same worker bee drive. Plenty of nondisabled people crave this sort of external validation, of course, but I have a feeling there are a lot of disabled people out there who, having been labelled ‘of little use,’ have grown into restless, rudderless people like me, asking themselves why they never feel whole unless others are counting on them.

And I’m sure there are many more out there who have yet to feel useful, at least by society’s narrow standards. Isn’t most disability defined, after all, by the work a person can or can’t do? By our earning potential? By our limited ability to contribute financially via the labour market? Don’t so many of us find that the only thing worse than a bad job is no job at all? Beyond financial constraints, what would unemployment say about us and our worth?

I think you’re out there, worker bees. I think you’re worried about whether you’ll ever be useful enough, and I think you find meaning in what you manage to get done. I believe you have mixed feelings about the fact that the toxic mentality that made you feel small and inadequate is giving you such fulfillment. I expect you live to hear people say, “you really helped me out today,” and I’d bet some part of you balks at the very thought of being so vulnerable to how others feel about you.

If I were to guess, I’d say you might even question whether enjoying your usefulness demonstrates a lack of self-respect, a brokenness, an internalized ableism you can’t quite shake.

Am I getting warmer?

So if you’re out there, worker bees, I propose the middle ground, as I so often do. Delight in your usefulness. Find the niche that lets you be a go-to person, even if it’s for something simple. Relish it without apology.

Yes, our society is obsessed with measuring the utility of human beings and punishing or rewarding them accordingly. Yes, that obsession is more pronounced and more damaging when those humans happen to be disabled. But don’t let that deprive you of the pride and fulfillment you derive from your ordinary, unglamourous work. Don’t chase admiration simply because someone told you that the only good disabled person is an outstanding one. Most importantly, don’t you ever buy in, the way I did, to the idea that your value lies in how well you stack up next to nondisabled people. That way lies madness. Life doesn’t have to be a competition. The unremarkable, uncredited tasks you perform every day have weight. All you have to be is the best version of yourself.

Go, worker bee, and find your hive. And when you do, take what brings you happiness and leave the rest.

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“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.

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.