discomfort

Make Yourself Uncomfortable. I Dare You.

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Let me start here, with a question I’ve had to ask myself many times recently: What is your personal comfort worth to you?

 

More specifically, what would you give up to avoid feeling unpleasant things like awkwardness and shame?

 

I invite you to be radically honest with yourself for this one: What are you willing to let someone else suffer so that you can feel comfortable in your skin? Is there a cost for comfort you consider too high, and if so, what is it?

 

Amid 2020’s many conversations on race, gender, queerness, class, and ability, I’ve been seeing the same theme cropping up over and over again: Discomfort. The people with the most privilege are made most uncomfortable by these topics, possibly because they believe they have the most to lose or, as race and gender columnist Shree Paradkar pointed out in this brilliant interview, because they worry that what the privileged have done will soon be done to them, in a kind of vicious, table-turning reckoning. The oppressors shall be oppressed. The straight, white, wealthy, highly educated male will somehow lose his right to be free, to marry, to own property, to vote, to have a voice, to run things, to be heard, to be respected, to hand out inflammatory hot takes on Twitter.

 

Perhaps nondisabled people have terrifying visions of a new world order where disabled people lock them into the institutions and low expectations that were once reserved for them.

 

Perhaps middle-class white writers like me are under the impression that if we let this “diversity thing” get out of hand, we will soon find ourselves crushed beneath the weight of all we have ignored.

 

(Perhaps marginalized groups aren’t actually calling for anything like this, and these fears say a lot more about the privileged than they do about those who call them out. Moving right along…)

 

I suspect that were it not for the visible disability that has defined and marginalized me from birth, I would be bleating just as loudly, defending my right to a comfortable life, free of hard questions, free of the obligation to make room at the table, free never to acknowledge that I’ve been playing my life on ‘easy’ mode, while so many have been stuck on ‘very hard.’

 

Yes, my whiteness has been a protective shield, one I liked to pretend wasn’t there at all so I could tell myself I merited everything I’ve been given. But the one thing I have never experienced for more than a moment here and there is comfort in my skin. My broken eyes and long white stick have seen to that. Fitting in is a foreign concept, and I know exactly what it has cost me to live at the service of other people’s comfort.

 

My entire life as a blind woman has, to one degree or another, revolved around other people’s need to feel comfortable with me. Different is automatically discomfiting, and it was my responsibility as the disabled person to mitigate this as much as I could. I must never put people on edge. I must never do anything too ‘blind.’ I must look and behave as much like a sighted person as possible, and I must face every rude question, every invasion and every aggression with saintly patience. I put people off, you see. People shouldn’t be held accountable for what they do and say when they’re uncomfortable, should they? People can’t progress beyond what they’re taught, can they?

 

As for my comfort? As for my desire not to feel unpleasant things like awkwardness and shame? That luxury isn’t mine to have.

 

If the person asking me why I bother to get a job makes me uncomfortable, well, them’s the breaks. People don’t know any better. Educate your little heart out, and move on, kiddo.

 

If powerful school officials and academics debating my right to an equal education makes me uncomfortable, well, I’d best work extra hard to prove them wrong. It’s on me to protect my rights and my dignity, to be a good example so the next disabled person won’t have it so hard. No pressure.

 

If the man dragging me by the waist because he insists I’m going the wrong way makes me uncomfortable, well, maybe I should get out of public life if I can’t handle the consequences. People are going to help in ways I don’t like, and I might want to try gratitude on for size. It’s not their job to be up on the latest how-to-help-disabled-people trends, come on.

 

If people congratulating my husband for “taking me on” makes me uncomfortable, maybe I ought to consider the fact that not everyone would be willing to “take care” of a blind partner. I’m really very lucky, you know. (My husband’s disability is invisible. The emotional labour I invest in supporting him through it goes uncongratulated, and so it should.)

 

I’m losing some of you, I know. You’ve heard all this before. It’s all very sad and whatever, but what can you do about it? You’re very sorry I had to go through this, that so many people had to go through this, but … shrug? You’re pretty sure you’re one of the good ones? Thoughts and prayers?

 

Stay with me just a moment longer, because I think I know where you’re coming from. If you’ve never walked into a new space and been physically blocked by people who thought that, just by the look of you, you shouldn’t be there, I can understand how you’d clutch your comfort close. If you’ve never had your hard-won qualifications dismissed because one glance convinced someone you were incompetent, I can see how you’d find all this a little mystifying. If you’ve never been asked, encouraged, even ordered to put up with abuse because your identity makes someone uncomfortable, then absolutely, I can imagine you’d be willing to give up an awful lot to make sure you never experience that.

 

I, privileged though I am, have lived with all of these realities, and I know the cost of someone else’s comfortable life. There are many levels of oppression I will never experience because I am a middle-class cisgender white lady with a pretty enough face who can usually get people to warm to her if they give her a minute or two to try. I’ve never been accused of committing a crime because I “looked” guilty, never been trained to fear the authorities the way Black and Indigenous people have. I’ve never been spat on or screamed at because I spread the “Chinese virus,” or because I belong to a religious minority, or because my gender presentation offended someone, or because someone assumed I must be a terrorist. And I will never get stuck behind the layered barriers faced by fellow disabled people who have racial, sexual, gender and other identities that put them at risk and push them even further to the margins.

 

Yet, I have lived in a visibly disabled person’s skin long enough to understand that each time we are made comfortable, each time our privilege is upheld, someone else suffers for it. Someone else is made uncomfortable. Someone else feels awkward. Someone else feels the shame and displacement we dare not shoulder.

 

This is what keeps me up at night, how attached I am to being comfortable, how in love I am with the security blanket of meritocracy and the bedtime-story mythology of ‘work hard and you shall be rewarded’ or ‘you get what you give.’ And if you’re white and disabled, if you’ve known one kind of oppression but have a hard time getting fired up about the kinds you don’t personally have to confront on a daily basis, I see you. I see you and I’ve been you and I think maybe you’re a little bit in love with that blue-sky meritocracy, too. You’ve hustled, haven’t you? You’ve worked hard and broken barriers? Why should anyone take that away from you? All this is making you a wee bit uncomfortable, isn’t it?

 

Yes, I see you there.

 

It’s time to sit with those sleepless nights. It’s time for me and, I hope, for even one person reading this, to move beyond conversations about discomfort. It’s time to stop giving each other credit for allowing ourselves to be uncomfortable, because that’s not an end. That’s the very beginning, the very first step. Much as we may resist it, Shree Paradkar was right when she asked that if the price of comfort is violence, oppression, murder, systemic marginalization, then what on earth is comfort really worth? Why are we celebrating our selfless willingness to experience discomfort when there is so much on the line? Why did I ever believe the lie that a little shame, a little awkwardness now and again would be enough?

 

So I’ll ask you again: What is your personal comfort worth to you? Is it worth violence directed at people you may never even meet? Is it worth the marginalization, abuse, and shaming of people who have never been allowed the luxury of being comfortable in their skin?

 

Think about it. Lose a little sleep. Watch how much you can grow when you stop being quite so comfortable. I dare you.

No Sex Please: We’re Disabled

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When I was about fifteen or so, I was scrolling through some disability-related books, not paying much attention to most of them. I became very alert, however, when I stumbled across a book (whose title escapes me) about society’s puritanical de-sexualization of wheelchair users. The book also delved into the experiences of other physically disabled populations, exploring the myth that we are not and do not want to be sexual creatures. This was a new idea to me, or so I thought. But, as I continued to read, I realized it wasn’t new at all.

I cast my mind back to a family trip to Mexico when I was about thirteen. This is well past the age when girls generally become convinced that kissing someone would be more fun than icky, and I was experiencing a tame awakening of my own around that time. As my sister and I walked down the sidewalks, with our elaborately braided hair and colourful bathing suits, the eyes of nearly everyone slid over me completely, or opened wide in fascination as they noticed the long white cane—that conspicuous symbol of otherness. These wide-eyed stares came from all genders, and I remember several people running back the way they’d come just so they could get a better look! (My sister and I joked that people should forget about taking pictures with monkeys and take pictures with me, for a fee, naturally.) If you’ve got it … flaunt it, I guess?

Now, if I was as stunning as my sister, it may have made a difference in the way people looked at me, but I’m not convinced of that. People tend not to actually see visibly disabled people, unless they’re gawking, that is. Beyond making us feel like monkeys ourselves, it can also seriously stunt our love lives.

I’ve talked about feeling like I wasn’t a real girl, and how I’m only just discovering that I’m satisfactory the way I am. That does not mean, though, that the rest of society has caught up with me. All throughout grade school, only other blind people showed any interest in me at all, and they could only communicate with me via the internet or telephone. (Most of them were as desperately lonely as I was, so I didn’t put much stock in their judgement.) I’m sure many sighted people didn’t flirt or approach me at all because they simply weren’t interested; that’s not a big deal. You can’t be everyone’s cup of tea. I am quite sure, however, that many boys I grew up with simply didn’t consider me based on my broken eyes, even if they did so unconsciously. There were girls, and then there was Meagan: normal enough to be friends with, but too alien to date.

Once I started talking to other disabled people about this, I discovered that they, too, were often rejected outright because of their disabilities, with people only realizing how attractive disabled people can be once they could get past their discomfort (assuming they ever did). If I put my cane out of sight and manage not to bump into walls, I don’t look blind, and I’m told that people actually look at me differently. Suddenly, I’m a human–a young woman who is potentially attractive to at least one soul out there somewhere. As soon as that cane comes out, though, I’m reduced to an asexual, undesirable creature who is off limits to everyone, romantically speaking anyway.

The worst bit is that some people apparently believe we want it this way! They believe that we wouldn’t want to become romantically involved, or that we don’t like or can’t enjoy sex. I can understand the confusion when it comes to severe cases of paralysis, though people need to do their research and be more open-minded even then, but it baffles me that someone whose body is in fine working order would still be de-sexualized. Even those whose bodies aren’t up to statistical standards of normality should not be ruled out; you’ll just have to get creative. Aside from all this, a disability should never rule someone out as a potential romantic partner right off the bat, based solely on the idea that they’re not datable. Judge them by their personalities, general physical traits, outlooks on life, and all the other attributes you’d evaluate in any able-bodied mate. Preferences are fine, but ignorance is not. We’re not children, and we’re definitely not puritans by design.

Next time you see a pretty girl in a wheelchair, go talk to her. Next time you meet an attractive blind guy, go have a chat. Next time you encounter someone with a disability who appeals to you, assume they’re a viable option until you discover otherwise. Finally, never, ever write them off as disinterested by default. How can you know until you try?

Chill Out, People: I Am Not Contagious

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I take the bus, and there are several empty seats around me, conveniently placed right up front. Someone embarks via the front door, and walks quickly past me to take a seat waaaay at the back. I sit down for a lecture, noticing that most students are clumped together, while others have gone out of their way to give me a wide berth. I flop down in a seat in a study lounge, only to have the person next to me gather their belongings and sidle over to a seat across the room. Anyone seeing a pattern here? Anyone? Anyone?

I’m not even sure if people are conscious of this, but I am beginning to think they’re convinced that blindness is contagious. Unless you have an eye infection and enjoy swapping mascara with strangers,, you’re probably not a threat to anyone else’s eyes, but I’m often treated like a leper. Some people undoubtedly move away because society puts a premium on personal space. Others, however, do so because I make them uncomfortable, which I understand is a common experience for many disabled people. Mothers drag their children away from the oncoming blind lady, while students shift restlessly when I sit down near them. It’s common enough for people to leave space between each other; Canadians aren’t really used to tight quarters unless they live in Vancouver or Toronto. Even so, people’s attitude toward me seems a bit too blatantly fearful to be blamed on a desire to avoid human contact.

There are a litany of reasons to avoid sitting near someone: I wouldn’t blame you a bit for avoiding the person sniffling noisily in the corner. Nobody likes icky cold germs, but unless I have ominous substances pouring from my red nose, there is no logical reason to steer clear.

I usually just shake my head and move on—what else can I do? I’d be lying if I claimed it didn’t hurt a little, though. I’m a nice person who is reasonably friendly. At the least, I’d never encroach upon another person’s space, and I might even provide good conversation if they only gave me a try. Students are especially prone to engaging strangers on campus, but they tend to ignore me unless they think I need help. I want to say to them, “I cannot give you blindness, okay? Mine is a genetic condition, so unless you’re my secret half-brother, please relax. You’re fine.”

Social exclusion and general discomfort are the order of the day for a lot of visibly disabled people, and all one can do is bridge the gaps as best one can. Sometimes, though, my snarky side prevails, and I feel the urge to shout, “Come sit near the freak, why don’t you? I don’t bite (hard)!”

So, friends all, take a seat by me. It’s okay. You’ll leave as healthy and sighted as ever–I guarantee it.