interdependence

Happy, Capable, Aggressively Okay

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For someone who has always dated men, I have fallen in love with a lot of women over the years. Of course, I didn’t recognize it as love at the time. I was a practically ancient twenty-two before I was sure of my queerness, because I was laughably out of touch with my own feelings. The archetypal queer story line, the one where you know it since kindergarten and come out all at once in a supreme act of courage, never fit me.

I came out slowly, haphazardly, often forgetting whom I’d told and whom I hadn’t. There were no secret girlfriends or covert confessions. There was no formal announcement, no awkward family meeting, no mess. People were either supportive or apathetic, given I had always been with men and it didn’t feel relevant to them. And because there was no closet narrative to speak of, I never quite owned my own bisexuality. It wasn’t hard-won, it didn’t oppress me in any meaningful way, so it felt like I’d cheated, somehow. That’s probably why I hardly ever talk about it; it doesn’t feel entirely real or entirely mine.

Recently, I’ve been thinking more about why it took me so long to realize that I was attracted to women in the same way as men. Some of it was the power of repetition. I always assumed I was straight, “straight as an arrow” as I used to put it, so when I experienced intense feelings for a woman, I imagined all women felt that way about their friends. Spoiler alert, younger self: No they do not.

But the more significant reason for my deep denial is related to my disabilities. When you grow up with needs society deems “special,” it’s hard not to resent your own body. Everything you are told about yourself as a disabled person is dusted with subtle (and not-so-subtle) messages about independence. At home, at school, at work and just about everywhere, you are served the paradox: You are dependent, and you should never depend on anyone. You are not as capable as others, and you should be as capable as everyone else. You are not okay, and you must always be okay.

Early on in my journey as a visibly disabled person, I learned to minimize and ignore my needs. I was the kid who wouldn’t ask to go to the washroom because she didn’t want to draw attention to herself, leading to inevitable and embarrassing consequences. I found it difficult to ask for food when I was hungry. If I got lost, I had trouble asking for directions. I made myself small, believing on some primal level that my needs were bad and wrong.

As I got older and better able to meet my basic needs independently, I learned to ask for help related to blindness, chronic pain, or mental health. I understood that interdependence was the only way I’d be a functional human being, so I mastered that uncomfortable art and gritted my teeth through the asking.

But I was more sure than ever that needing things was bad and wrong, so I sidelined my non-disability-related needs instead. I allowed myself to be bullied. I refused to share my struggles with most people, even those willing to help. When asked how I was doing, I was adamantly, aggressively okay. In that way, I made myself even smaller.

What does this have to do with queerness? If you’ll excuse some gender generalization, everything.

See, I was almost always able to convince men of my strength. If I told them I was just fine, even with ample evidence to the contrary, they usually believed me. Women, on the other hand, seemed to see right through my hard-shelled deception. Many men have cared for and nurtured me over the years, some of them perceptive enough to notice when I was trying to be a hero. But the women I kept falling for—elder siblings, motherly types, people used to looking after others—were the ones who could not, would not be fooled, maybe because they’d used all my tricks to hide their own pain. They were the ones referring me to crisis teams and buying me groceries because they knew damn well I was hungry and dangerously not-okay. They were the ones trying hard to save me from myself, doggedly asking the hard questions, at times offering help in ways that made me feel overwhelmed and resentful.

One of my crushes was so persistent I accused her of being a Mother Teresa type, which, far from deterring her as I’d hoped, seemed to embolden her. (I’m very good at making people go away when I fear they might actually get to the heart of who I am. She would not be fooled and she would not be turned away.)

All of this was hidden from me because of my afore-mentioned denial skills. It’s only in the past few weeks that I’ve realized I am not an open book with the vast majority of people in my life. Friends and relatives have complained that they can never get anything out of me. I tend to redirect conversations back to the other person if things get too serious. Part of me is still fiercely guarded, and I was the last to know about it. I tend to pull back when I sense someone is starting to understand me a little too well, and the moments in which I do overshare happen because I am so closed-up the rest of the time.

Lately, I’ve been sidelining my emotional needs less. I’ve been reminding myself that those who love me are pleased when I share my burdens and hurt when I don’t. I should not shy away from love’s vulnerable imperative. I should receive it as the counterintuitive, subversive gift that it is.

None of my needs is bad or wrong. No disabled person’s needs are bad or wrong. We should be teaching disabled kids to speak up loudly when they’re hungry, thirsty, lost, scared, or in need of a washroom. We should be encouraging disabled people to welcome, not apologize for, their very human, very normal needs. We should assure them that interdependence is positive and necessary, that they need not pay for their “special” needs by pretending to be aggressively okay. We should remind them of their legitimacy as healthy human beings with emotional and spiritual needs, and we should drown out the drumbeat of shame society forces them to march to each day. They’ll get plenty of that shaming from people who don’t love them the way we love them. Contrary to popular belief, hearing these narratives from loved ones is not less painful than hearing them from strangers, nor are these messages particularly helpful.

Listen, friend who is reading this and thinking, “I see what you’re saying, but…”

I am not telling you to abandon advocacy, independence and self-reliance. One of my greatest personal treasures is my ability to take good care of myself when I must. I am only telling you that you cannot make up for your disability by refusing to lean on the world in any other way. You can’t, and you shouldn’t. And when you meet someone who sees right through you, and wants to take care of you anyway, try letting them, because nondisabled people lean all the time. We just don’t call it “accommodation” when they do. Mostly, we call it love.

Whether you know it or not, friend, your refusal to lean as others lean is costing you. One day, you will be in great, undeniable need. One day, you will come to the end of yourself, of what you can do, and you will have to reach out. Take it from someone who knows: It’ll be a lot easier if you practice.

What It’s Like To Lose Your Eyes

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It’s quite common to hear blind people use “eyes” in the abstract sense. Guide dog handlers, for example, tend to refer to their dogs as their eyes, and for all intents and purposes, they are. When we need sighted assistance, we often ask to “borrow” someone’s eyes for a moment. There’s even an app called Be My Eyes, which lets sighted strangers lend us their vision.
I’m a cane traveller, and a fairly independent person, so while I occasionally ask people to be my eyes, it’s on a temporary basis. Until recently, I had no idea what it was like to depend upon someone to do this consistently, and I’ve learned that it’s devastating to lose something so valuable.
Yesterday, an exceptional coworker resigned. It was a terrible blow in more ways than one. I’ll certainly miss her sunny disposition and stellar work ethic most of all, but I’ll miss her deeply for another reason: nearly every day, she functioned as my eyes—and she did so with remarkable efficiency and kindness. Somehow, this gal always knew just what I needed. She provided the right info, sensed when I’d need help and when I wouldn’t, and would frequently drop whatever she was doing to come to my aid. She had more faith in me than I’ve ever had in myself, defended me when I didn’t have the energy, and was always reminding other coworkers of my competence. When it was assumed that I’d be unable to do simple tasks like chair a meeting or take minutes, she was more outraged than I was. When people would send undescribed images to me or fail to provide reasonable accommodations, she was right there, standing up for me. I’m used to these issues, but she considered them to be unacceptable and never let me be trampled or overlooked. I came to rely upon her almost as much as, say, my partner and friends. While I can do my job on my own, she made the experience infinitely easier, and I find myself feeling hopelessly bereft without the pair of eyes I’ve come to lean on so heavily.
I always strive to ensure that I can accomplish as much as possible without sighted intervention, but it’s difficult not to use the benefit of other people’s vision when it’s made readily available. I’ve come to terms with needing occasional help after a lengthy struggle, and I no longer believe that total independence is necessary or even healthy. Interdependence is an essential part of the human condition, and even my stubbornness, while useful, had to be put aside when push came to shove. This is why I tend to jump into any conversation in which disabled people are championing complete independence as though it’s a status symbol or accomplishment. It’s normal to lean on each other; that’s what friends, coworkers, and family members are for. If you can’t accept that disability is going to be, well, disabling, you won’t get far.
I’ll figure it out, of course. I currently have an intern working with me who is gracious and patient. He comes running when I need him, and is eager to learn how to assist me. Still, it’s going to be a long, hard road to perfect adjustment. I’ve gotten accustomed to someone who grasped how to treat a blind person without much guidance, and I’m spoiled, simple as that.
So, dear coworker, I’m going to miss you. I’m going to begin sending you emails asking for descriptions of images, or call your name from across the room, or try to delegate tasks to you that I just can’t handle on my own due to one barrier or another. Once I remember that you’re no longer there, I’ll have a moment of frustration to contend with. I can function without you, but, well, it’s gonna suck.
Be gentle with people who have lost their eyes. Be kind to those who have lost a guide dog, or a helpful friend, or a seemingly indispensable coworker. Be extra compassionate to those who, like me, are floundering and feeling miserable about it. Regardless of how determined we are to be self-sufficient, we need to be reminded that it’s okay to admit that our disability will inevitably make life more complicated, and we’ll have to use the human resources we have whether we like it or not. Last, but not at all least, cherish those, whether animal or human, who give you their eyes. Encourage them, praise them, and thank them. People who “get” us, or try to, are gems, and we ought to treat them accordingly.
In the coming weeks, I’ll gather my courage, appeal to that core of steel in me, and move forward. Today, however, I’ll permit myself a few tears and a bit of a sulk. Bear with me as I navigate these waters; I’ll need all the love and support you can give me. Now, do excuse me while I search for chocolate and other comforting stuff. (If you want to send me said chocolate, I’ll be extravagantly grateful. Wink wink, nudge nudge.)

I Need You To Need Me

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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.

I Put My Trust In Strangers (And It’s No Big Deal)

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Nearly every time I show a stranger how to use sighted guide, they view my trust in them as admirable and brave. “I mean, I could be anybody! I could walk you off a cliff or something!” Some guides are so nervous that they get distracted by the burden of responsibility; this usually results in decreased awareness. I try to encourage them to relax: a nervous guide is usually a dangerous one—or at least an inconsistent one. Even the best guides, though, seem somewhat uncomfortable with the amount of people I need to trust in day-to-day life. I trust guides not to walk me off cliffs, it’s true, (though using a cane in conjunction with sighted guide helps—not everyone does this), and I trust people to be generally decent. I assume that most people will not deceive, manipulate, or harm me. And you know what? Most of the time I don’t give these assumptions a second thought.

All this trust bothers sighted people, though. Perhaps it’s because they are acutely aware of how much they rely on sight to keep themselves safe, so the idea of going without terrifies them. Perhaps it’s because they recognize their own fallibility, and they imagine my inherent vulnerability must far exceed theirs. The most likely explanation is that people worry about me, and want me to be okay. I’ve encountered peers who expressed horror and anxiety when I told them about all the times I’ve nearly been run down by drivers who didn’t feel like obeying general crosswalk etiquette. Fear is becoming a staple of most Western cultures, and that fear multiplies when disabled or otherwise vulnerable populations (like children, for example) are involved. We can’t let kids play out of their parents’ sight, and God forbid we allow them to climb a tree or walk to school on their own. This general anxiety invariably extends itself to shroud any and all disabled people, to the point where the able-bodied are far more afraid for our lives than most of us could ever be. Most of these risks are genuine, and the resultant anxiety has its roots in sensible instinct. I don’t intend to trivialize the very real dangers vulnerable demographics contend with. I don’t blame you for feeling a little overprotective of your children or disabled friends. It’s perfectly natural.

Everyone has to trust sometime, of course. Any time you get into a taxi or board a plane, you’re entrusting your very life to a stranger, whom you hope is well-trained and trustworthy. If you can’t operate a plane, you trust a pilot. If you can’t navigate a brand new area with complete confidence without sight, you trust a sighted guide. It’s that simple.

Now, I can’t discuss trust without emphasizing the need to have that trust honoured. If I trust you enough to let you lead me somewhere unfamiliar, particularly without my cane, you’d better not leave me stranded. If I trust you to obey the basic rules of traffic, you’d better not run me down. If I trust you to describe my surroundings, you’d better remain truthful. These are the basics.

If I’m trusting you to respect me, please don’t use my own blindness against me, particularly in public where opportunities for humiliation are numerous. If I’m trusting you to be my eyes, don’t exclude or invent details just because you can get away with it. If I’m trusting you to treat me like any other human being, please don’t make a spectacle of me. (Disguising your voice in an effort to trick me is not cute.) Finally, if I’m trusting you to keep me safe, don’t warn me of fictional obstacles, or subject me to similar practical jokes. They’re hardly ever funny and they can be more dangerous than you know. When in doubt, ask which ones I’m comfortable with, and if you’re a stranger, assume they’re unacceptable until you’re told otherwise.

This is not to say that I rely on others for every little thing. My readers, in particular, will understand how highly I value independence. If I can do something safely and well on my own, then I’ll avoid asking for help I shouldn’t need. Still, to pretend I never need help is misleading. So, yes: I do put my safety in other people’s hands on occasion. It’s almost never an issue.

I’m at peace with having to trust people, even strangers. I have little choice but to count on human decency, and so I do. In the vast majority of cases, my trust is valued and my faith rewarded. Nine times out of ten, I don’t even think about it, because it’s so intrinsic to my lifestyle. So don’t worry too much. You’re probably a better guide than you know. You’re probably a more accurate, useful describer than you realize. In short, relax: you’re probably doing just fine.