boundaries

Forget Sorry: No is the Hardest Word

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Saying no is hard. Luckily for those of us who hate to make waves, there are reams of advice out there about saying no on a date, at work, at holiday events, and in tough situations with family and friends.

Creating boundaries is uncomfortable, and enforcing them is worse. Nevertheless, I believe that many of us are getting better at doing both, despite people’s general inability to handle it gracefully.

The one area of my life where I feel that ‘just say no’ is punished more often than rewarded, even by those who profess to respect boundaries, is—you guessed it, clever reader—disability. I know in my heart that it’s better for my health, my safety, and my peace of mind if I say no to all kinds of things: unwanted help, condescending praise, unsolicited charity, events that worsen my chronic pain, exploitive volunteer opportunities, intrusive personal questions, etc. (I could go on for a long time. I’ll spare you.)

And yet in this, the year of our Lord 2019, it is still controversial, inflammatory even, for my disabled friends and me to say no to any of these things. When we do, we have to deal with a whole lot of anger, hurt, wounded pride, and bitterness, plenty of it from people who have power over us, and plenty more of it from fellow disabled people who enjoy sabotaging others’ autonomy almost as much as their own. Because of course.

Let me show you what I mean with a few comparisons. Comparisons are fun!

Saying no to unwanted touch on a rough first date? Scary, but empowering. Saying no to the person physically dragging you along because he thinks you really, really need help walking through that doorway? Ungrateful.

Saying no to the grandparents who want to load your kids with sugar? Awkward, but that’s just responsible parenting. Saying no to the relative who won’t stop feeding your service dog? That’s just a major overreaction.

Saying no to the free sample, the donation box, the religious pamphlet being offered by a stranger on the street corner? Totally your call. Saying no to the gifts, money, prayers, advice, weird coupons and assorted pity offerings from strangers on that same street corner? Totally uncalled for.

Saying no to the private company that wants your free labour in exchange for “exposure?” Gutsy; you deserve to get paid for your hard work. Saying no to the private company that wants your free labour because your identity provides the illusion of “diversity?” A disservice to the disability community; you should be grateful just to be noticed.

It didn’t take long for me to learn, as a multiply-disabled person, that like so many other marginalized groups, ‘no’ is not for disabled people. ‘No’ is not for people who want help in the future. ‘No’ is not for those who need to rely on people who hurt them. ‘No’ is not for the vulnerable. ‘No’ is not for those needing accommodations or assistance or a hand up. There is only ‘yes,’ and ‘thank you,’ and ‘thank you again!’ Anything else risks anger, risks strained relationships, risks exasperating conversations about ‘humouring’ people and ‘making them feel useful’ and not turning boundary violations into a ‘whole big thing.’

Do we routinely take these risks? Most of us do, yep. Is it exhausting, demoralizing and sometimes dangerous? You bet.

I’ve learned to live with almost every ‘no’ being met with questions like, “Why can’t you just keep the peace? Why can’t you just let them help? They’re just curious—why are you being so rude? Why can’t you suck it up? Why can’t you just be nice?”

Because, you know, being nice comes naturally when a stranger has his arm around my waist and is brazenly ignoring my ‘no, my ‘I’ve got this, thanks’, my ‘please let go, my ‘seriously—let go of me immediately.’ Niceness begets niceness, clearly.

So here are my questions, which will look familiar, no doubt:

  • Why can’t the person who is tugging on my arm be nice and keep their hands to themselves?
  • Why is a stranger asking me personal questions about how long I’ve been disabled, and what happened to me, and how on earth I manage? Why can’t they rein in their curiosity and stop being so rude?
  • Why can’t the person whose request for free work I just turned down stop making it into ‘a whole big thing?’
  • Why can’t the person petting, feeding, distracting my friend’s service dog suck it up and follow the rules?
  • Why can’t the person telling me I shouldn’t work, shouldn’t leave the house, shouldn’t participate in public space just keep the peace and leave me alone?
  • Why isn’t no enough?

If you ever find the answers, heaven knows my inbox is open. Until then, I’ll keep saying no, (often politely!), keep setting those boundaries, keep trying to change this toxic double standard we’ve all helped to create by being so doggedly nice, even when someone is harming us – especially when someone is harming us. I hope you’ll do the same.

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Satire: 17 Easy Ways To Make A Blind Person’s Day

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1. When introducing yourself, use loud, exaggerated speech. Since we’re blind, it’s safe to assume we’re a little dim, too.
2. Don’t speak directly to us. It’s always best to talk over our heads like we’re not there at all, especially if you are offering a service. Example: “What would she like to order?” Be sure to ignore our attempts to answer for ourselves.
3. Grab or otherwise manipulate our bodies whenever and wherever you deem necessary. For example, if you intuitively perceive that we’re going the wrong way (even if you haven’t asked where that is) just snatch the nearest limb and lead on, Macduff!
4. If you aren’t in a position to grab us, you can always shout instructions in the hope that we’ll know what you’re talking about. If we look baffled, just keep repeating the instructions in an increasingly frantic tone. We’ll clue in eventually.
5. Remind us often how grateful we should be that people are willing to provide accommodations for us. While it’s unlikely that we will ever, ever forget this for more than five minutes at a time, it’s a good idea to slam the thought home when we’re not expecting it. It builds character.
6. Stage loud conversations about us while we’re in the room, because we won’t hear. If we hear, it’s okay, because we won’t understand. If we understand, it’s okay, because we won’t care.
7. Keep all conversation firmly focused on blindness. If we try to interject by discussing our education or interests, just redirect us. We get carried away trying to be all normal, so it’s helpful to keep us on track!
8. Be sure to describe all the other blind people you’ve ever met, in extravagant detail. We couldn’t be more fascinated by that blind guy who skied, and that other blind guy who went to school with you, and that blind girl you met on the train once—the one with the cute puppy…
9. Make a habit of asking us why we’re “here”. If we’re on the bus, ask us why we’re out alone. If we’re at work, ask us how we got the job. If we’re in class, ask us why we’re in university. If we seem offended, ignore us: deep down inside, we really enjoy presumptuous interrogation!
10. Dispense advice about how we should live our lives; the less you know us, the more valuable your feedback will be. If you need a good starting point, you can begin by analyzing our mobility tool of choice (cane or dog) and emphatically demanding that we switch. We love that.
11. Involve yourself in our love lives, specifying exactly the type of person we should date and why. If you think we should date a sighted person because they’ll be able to take care of us, we’ll want to hear all about it. If you think we should date a blind person because we should “stick to our own kind” we will be all ears!
12. Give us things—money, coupons, whatever—because you pity us and want to make our day better. Don’t be fazed by any apparent expressions of confusion. (“Oh, that’s just my gratitude face!”)
13. Stop us on the street and thank whomever we’re with for helping/taking care of/being so kind to us. It’s not as though we have real friends who genuinely enjoy our company. No: if we’re out with a sighted person, they are fulfilling a purely charitable role. They will appreciate your praise, and we will feel extra extra grateful!
14. Place your hands on us in any public place and pray. If we gently explain that we don’t want to be prayed for, rest assured that it’s just the secular cynicism doing the talking. When our sight is miraculously restored, you’ll be the first to know.
15. Make as many potentially dangerous practical jokes as you can think of. A few good ideas include warning us of imaginary obstacles (“Watch out for that tree-just kidding!”), concealing our possessions, and encouraging us to “find” you while you run gleefully around us in circles. These were a staple of primary school, and I treasure many pleasant memories from that era. Do me a favour, and bring back the nostalgia!
16. Refer to us as “that blind person” even after you know our names. Blindness is so integral to our identities that our names are really just decorative, so there’s no need to remember or use them. If we fail to answer to “Hey, blind girl/guy!” just keep trying. We’ll learn to love it.
17. Assume that our default status is “Help!” If we reassure you that we’re okay, thanks, don’t fall for it. Insisting upon rescuing us every time we cross paths places us into a position of dependence, which is exactly where we belong.

Don’t Mess with the Stick

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While I’m not nearly as attached to my cane as other blind people are to their guide dogs (for obvious reasons) I still like having it around. It’s my mobility tool of choice, and it works well for me. More than that though, it represents security. A cane will almost always tell me what’s directly in front of me. It helps me walk in a straight line, because I can trail along walls, sidewalks and so on. My cane is a major contribution to my independence.
The cane is called many things, some of them peculiar: I’ve heard people call it my “helper”, “walking pole”, and even “special friend”. One older gentleman approached me and asked me whether I hike; “I have one like that, too,” he gushed. It’s hard to keep a straight face, let me tell you. I don’t mind if someone refers to it as my “stick”, but some blind people are particularly sensitive about it. If you’re unsure, just use cane to be on the safe side.

People are sometimes unaware that it’s important to me. They don’t know that it provides a degree of safety I wouldn’t otherwise have. They treat it like any other ordinary object, much the same way you’d treat a coat or backpack. They handle it like something they can take away from me.

When I enter someone’s home, I will often allow the cane to be taken away, for the simple reason that bringing a cane into a house is akin to leaving your shoes on—something that simply isn’t done in my culture, at least. It’s been everywhere my shoes have been, so it’s often trailed through mud, snow, and … other things, of which I prefer to remain ignorant. Unless I feel really uncomfortable navigating a strange house on my own, I will be glad to store the cane and use sighted guide instead.

In all other places, though—including and especially outdoor areas—I insist that my cane remain in my hand and under my control. If I’m left in an unfamiliar area without my cane, I become far less secure in my environment. I’ll walk much slower than normal, in case I bump into something. I tend to shuffle along, because I’m feeling my way with my feet instead of a cane, searching for tactile feedback. I will rely even more heavily on my hearing, so that I stand a chance of detecting larger obstacles like pillars, which create sound shadows. I never feel as blind as when I don’t have my cane with me.

Even when I have it handy, people fail to respect boundaries. They’ll lead me by the cane, pull it out of someone’s path, or even insist that I let go altogether so they can guide me (something I seldom allow). I acknowledge that it really does get in the way sometimes. If I have one hand on a guide’s elbow and the other on my cane, my hands are both occupied. My sighted guides often end up carrying trays, drinks, and other awkward objects I can’t put in a backpack or dangle from my arms. I hate that they have to do this, though they are almost always glad to accommodate. Then of course there is the issue of grace: canes are meant to bump gently against things—that’s what they’re for. If I don’t encounter something with my cane, I usually don’t know it’s there at all. Inevitably, my cane will bump things like ankles and—in one unfortunate case—more sensitive bits. It occasionally trips people, though that can be a symptom of distraction on their part. So, yes, it does make life harder for those around me, especially if they’re not paying much attention.

Although it gets on everyone’s nerves (including my own), I refuse to go most places without my cane. Indeed, when I’m without it, my right hand feels awkward. It’s not used to hanging limply, as though it’s uncomfortable without something to grasp. It’s absurd, really, but without my cane I feel slightly unbalanced. There’s something off about going without, unless I’m in a very familiar environment. Mine is collapsible, so it’s easy to bring it everywhere and fold it up when it’s not in use. That way, it’s there the moment I need it. The cardinal sin of cardinal sins: never, ever abandon me in an unfamiliar environment without my cane. If I’m trusting you enough to go anywhere with you sans mobility tool, don’t break that trust.

I sometimes wish people would respect and tolerate the cane the way they respect and tolerate guide dogs, which are far more conspicuous. My cane can’t bark, play, or scrounge for food, after all.

I hope this post has adequately explained why you shouldn’t mess with my stick, why you mustn’t insist that I leave it behind, and why it’s necessary to witness the stares I’ll invariably get. It’s just one of those things. So please—leave the stick alone.