shame

Happy, Capable, Aggressively Okay

Posted by

4

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.

Skills, Skills, Skills

Posted by

1

For most people, skills are associated with employment, sports, and the arts. Unless we’re talking about early childhood development, few people think of cutting a steak or crossing a street as a “skill.” The era of lifehacks and “you’ve been doing these basic things wrong your whole life” articles is slowly changing that, but for the most part, nondisabled people don’t waste much time fretting over life skills. Surely such a term is too lofty for the everyday minutiae of life? Being highly-skilled implies specialization and, if you’re lucky, acclaim.

In the disabled world, the landscape can look quite different, in the realms of socialization and daily living. My writing and editing skills win me a fair bit of respect, for example, but what nondisabled people don’t realize is that I find travelling infinitely more demanding than writing, and spend almost as much time agonizing over the way I navigate my city as I do about the key messages I write every day.

Why do I spend so much time worrying? It’s not about safety or quality of life, so much: I know enough to function, and I’m getting better at asking for help. No, the bulk of the anxiety comes from the blind community’s obsession with skills. I call it “skillification,” where every minute task a blind person struggles with turns into a conversation about skills and methods and philosophies. A simple thread about knife technique can morph into a bloody civil war, as people scramble over each other to be heard, especially online. This commenter thinks there’s only one right way to use a knife. That one believes disabled people shouldn’t use knives—do you know how dangerous knives can be? A third thinks people should just do whatever comes naturally, and damn the textbook approaches. Another admits that he just gets his mom to do it. Someone else is squalling because blind people are so pathetic these days. At one point, somebody will probably mention American training centres, prompting someone else to start grousing about the NFB or the ACB or the IDB–insert alphabet soup here. Meanwhile, the unwitting author of this conflict just wants some tips on chopping the freakin’ onion.

Whenever I watch this play out, I always think the same thing to myself: “You had one job, blind community. Your job was to answer this person’s question as best you could, and you turned the whole topic into a judgmental philosophy discussion. You blew it. Well done.”

Don’t get me wrong; skills training is just about essential for any blind person who wants to live a reasonably independent life. In some senses at least, I wish I’d had more specialized education growing up, and I wish the focus of what I did receive had been more practical. But when complete strangers feel comfortable critiquing not only my methods but also my self-respect, the whole thing starts to feel a tiny bit absurd.

If you seek them out, you’ll find highly-trained professionals who will teach blind people the “proper” way to plug in a kettle or slice a banana. Books have been written about how to help blind people dress and groom themselves. I vividly remember a pamphlet my parents were given that featured a multi-step process for pouring milk. (Yes, it was that specific.) These resources can be handy, and I certainly appreciate experts who give on-the-ground advice, but the degree of dogma surrounding the precise methods people use to perform the most basic tasks is unnerving.

I believe all blind people should have access to skills training, and the freedom to explore alternatives. For people experiencing vision loss, relearning just about everything they already know how to do is a huge challenge, and they deserve to have help along the way. There is nothing wrong with excelling at “blinding,” as I like to call it, and skills gaps in areas like travel and etiquette can take a massive toll on quality of life.

I do, however, believe it may be time for the community to re-examine the way it perpetuates “skillification,” and how it can cause unnecessary shame and stress for people who are beginning to lose their vision, or who have never received much assistance in childhood. Generally speaking, the “official” ways in which blindness skills are taught vary widely, and there’s a lot to be said for finding what works for you and sticking to it. There’s also a lot to be said for being less willing to compare blind people to each other without accounting for the many other factors that influence a person’s adulting skills. I know plenty of sighted people who can barely use a microwave, but no one is sending them to a training centre.

In short, friends, do your thing, and do it in the way that makes the most sense for you. Do it safely, and do it well if it’s something that means a lot to you. Help others improve, if that’s what they want. Consider the skills that will help you attain your goals, and find ways to cultivate them. (Want to be invited to those business lunches? Better polish those table manners.) Before deciding something isn’t worth learning, understand the consequences of going without that skillset.

But if you have no interest in proper technique for serving five-course meals? If your preferred method for cracking eggs differs from the one your blind friend uses? If you never received official independent living skills instruction on how to bake a cake, but your cakes are no less delicious for it?

Well, then, don’t let the squabbling hordes get you down. You’re probably doing just fine.

Letting Go Of Normal

Posted by

4

Don’t talk about disability. Don’t write about your blindness. Don’t mention anything that makes you different. Feel ashamed of your cane. Never disclose. Blend in. Hide.
Not so long ago, I lived by these rules, and most troublingly, they were of my own making. I’d endured my fair share of awkward stares and been asked to conceal my cane in photographs, but on the whole, I was not discouraged when it came to simply being me. I was blessed with a relatively accepting community that understood blindness was a part of me (but not the only part), and never required me to pretend otherwise.
Yet, I felt an overwhelming desire to “be like everyone else.” I suppose most young people seek a sense of belonging, but this ran much more deeply than a youthful herd mentality. I was always a bit of a loner, so wasn’t as influenced by popularity contests as my peers.
Instead, I pursued a much less attainable goal: I wanted total erasure of my disability. Seeming “too blind” was a mark of failure. I’m not entirely sure where it came from, but a persistent sense of shame dogged me everywhere, and while I tried to combat it at different points and never resorted to refusing to use a cane, I fought my essential differentness just as fiercely. It didn’t show much, because on some level I knew it was foolish, but I carried a lot of internalized guilt and unhappiness, and the voices in my head told me to erase any traces of perceived inadequacy, which included blindness.
The way I saw it, disability was nothing but a stumbling block. If I was sighted, my life would be ever so much more fulfilling. (I’ve grown a whole lot in the last five years. It’s really rather astonishing.) I fervently believed that disability stood in the way of everything I lacked: a job, a boyfriend, general acceptance, and the right to be “normal.” Blindness certainly interfered with these goals, but assigning sole blame to my broken eyes was far more disabling than acknowledging there might be other factors at play.
When I was introduced to other disabled people who were content with themselves, the problem worsened. I was resistant at first. Why is everyone yelling about disability? Shouldn’t we be stressing how normal we are? Why aren’t we working harder to blend in?
My refusal to be identified with my disability began to permeate my writing, my self-image, even my relationships. I resented it when I needed help, and avoided writing about disability, even when encouraged to do so. I went on and on about how I wasn’t “like other blind people.” No no, I was much more committed to assimilation, and far more aware of my place in the sighted world. All these people placing disability at the forefront of their lives had it all wrong. The key to a better life for us all is to be more like able people! Why don’t they realize this? Why?!
I eventually had to come face to face with an uncomfortable truth: disability is not the only or most important part of my identity, but it matters, and it deserves to be acknowledged. Further, I was forced to admit that pretending my disability didn’t exist, and only referring to it in a self-deprecating, apologetic way wasn’t helping anyone, least of all fellow disabled people. The path to equality did not lie in erasure, but in acceptance. How could others accept us if we did not accept ourselves? How could others understand us if we didn’t open up? Why did it feel so wrong to express myself in the context of a disability I live with each day?
Of course, I still feel squirmy when my blindness is brought up in unrelated discussions. I dislike talking about it in job interviews, at the doctor’s office, in cabs, on the bus, on a street corner. I grow weary of proving that I’m more than my blindness, and that my disability doesn’t hamper other forms of self-expression.
On the other hand, I now feel at ease with bristling when someone suggests I put my cane out of sight. I make blind jokes with joyful humour rather than with shame disguised as mirth. Asking for help is still difficult, but I take it in stride rather than cringing with embarrassment. I speak up. I stand up. I don’t hide anymore.
No, blindness will never be the chief focus of my life, even though I consider myself a disability advocate. I’ll always frame my identity in a much more complex way than as “blind girl.” I am a blind girl, yes, but I’m also a writer, and a communications specialist, and a friend, and a lover, and a daughter, and a sister, and a musician, and a bookworm, and, as my Twitter bio reveals, a fierce defender of the Oxford comma.
All this being said, I hope I will never again believe that the best way forward involves concealment and shame and the quest to disappear completely. I’ve found that, in my own life at least, asserting my humanity is best accomplished by embracing my differences rather than shunning them. The world is far more diverse than many would think, and I’m merely a part of that glorious tapestry of diversity. I don’t have to be proud of my disability, or view it as a superpower, or “embrace” it. No one has to do anything in particular; isn’t that the whole point of our advocacy, in the end? Aren’t we all just focused on giving everyone equal choice and license to express themselves however they wish?
So, talk about disability, as often and as loudly as you want (or don’t, that’s okay, too). Write about your disability. Mention anything that seems relevant, even and especially if it makes you different. Never feel ashamed of your cane or service dog or wheelchair, or any other symbol of your disability. Disclose, if you think it’s wise. Don’t blend in unless you really want to. Most of all, never hide. Whether you live in the spotlight or in the most ordinary of circumstances, never hide.

Accommodation with a Side of Guilt, Please

Posted by

12

This evening, I went out to dinner with some friends. I ordered a dish I’ve eaten many times (a salad) only to find that they’ve begun presenting it in a new way: the dressing was in a small cup on the edge of the platter, rather than atop the food as it usually is. I froze, slightly embarrassed. I’ve always had trouble dressing my salad if it’s in a cup. Squeeze bottles? No problem. These give me a certain degree of control. Cups, however, are a different story. (Disclaimer: some blind people have no issue with these whatsoever.) I was just about to ask someone at my table to help when our extremely-attentive server materialized at my elbow:
“Do you want me to take this back and dress it for you?”
“Um…no, it’s okay…it’s just a bit awkward—“
“I totally understand. Don’t worry about it. I’ll be right back.”
Away went my plate. The server appeared several minutes later, saying “Here’s your salad. We have a special rule here where each time food is sent back for any reason, we have to actually make a new dish. So, we just made you a new salad and dressed it for you.”
I was stunned. I had just inadvertently wasted an entire plate of food so that someone could put dressing on top of my salad for me? Forget being slightly embarrassed: I was mortified and, I confess, a little ashamed. While the server reassured me that it was all okay, I silently asked the powers that be to disappear me immediately. They did not oblige.

I’m used to being “accommodated”. Indeed, I often expect it: when I enroll in university classes, each of my instructors is given an accommodation letter, which describes the accommodations I’ll need to participate fully in the classroom. (If I sound like a handbook, that’s because I wrote one—no, really!) I also expect workplaces to make (reasonable) accommodations to the work environment. This is something I’ve been encouraged to view as normal and acceptable. As is typical for me, I have felt heaps of unnecessary guilt over accommodations, even when they are deemed “reasonable”. Once, in ninth grade, my science teacher got together with a few others on staff and made me a periodic table, so I wouldn’t have to use the rather inadequate one in my textbook. My junior high Industrial Arts teacher went out of his way to make sure I could try out all the same equipment everyone else could. He even positioned the end of a nail gun while I fired, showing a remarkable lack of concern for his fingers. (If you’re reading this, I want to thank you. I’ll never forget that one.)

When people go above and beyond the call of duty for me, I feel grateful (healthy) and horribly guilty (unhealthy). Instead of simply thanking people and getting on with things, I waste time and emotional resources worrying about how undeserving or inconvenient or high-maintenance I’m being. While the person who is helping me is busy doing me a favour, I’m busy coming up with all the reasons I shouldn’t be accepting it. Even when I do accept it, as I did with that salad, the shame and humiliation will plague me for days. Yes, you read that correctly: days. This particular incident was so awkward that I’m amazed I didn’t start crying right there at the table; goodness knows I wanted to.

As far as the server was concerned, she was helping a gal out, no more no less. I have no idea what the kitchen staff thought, though I wouldn’t be surprised if they were about a dozen different kinds of exasperated. As far as I was concerned, I’d manage to waste food, fill my server’s time with running back and forth (in a very busy restaurant, I might add) and make a fool of myself all in about five minutes. I’m cringing as I write this, but the more I think about it, the more I realize it needs to be discussed. There are probably a lot of people out there who have felt how I’m feeling right now.

I’m trying to be okay with being accommodated. I’m trying to be at peace with accepting help, and depending on others, and even letting people do me favours now and then. Could I have dressed the damn thing myself? Of course. Would it have been less messy and awkward to have someone else do it? Absolutely. Did I force anyone to do it for me? No. Am I still going to feel awful about it for days to come? Yup.

But should I feel guilty? Most people seem to think I shouldn’t. Accommodations are there for a reason, and in many cases they are universal enough to be made into policy and/or law. But just because it’s not in a handbook or policy statement doesn’t mean it can’t and shouldn’t be done. While imposing unreasonable accommodations on people at work, school, and elsewhere isn’t going to further the cause, it shouldn’t mean that any random act of kindness ought to be rejected.

Should we make a habit of letting people do things for us, especially when we’re capable of doing them ourselves? If you know me at all, then you know I’d never suggest such a thing. However, this does mean that we should be comfortable with accepting what people want to give us now and then. If it’s not a sin to let someone carry your heavy bag, or hold open a door, or grab you a drink (all things sighted people let others do for them on a regular basis) then why not let someone offer kindness if they really, really want to?

I’m learning, guys. I’m learning. But for now…I think I’ll go and have that cry.