assistance

Skills, Skills, Skills

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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.

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Let Me Be Generous

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Earlier this week, a particularly trying driver took me to work. Exhausted from too little sleep and running dangerously low on patience, I listened as he prattled on about his “amazing” blind friend, with whom I must be utterly fascinated since all blind people are endlessly interested in each other, right? I explained how my phone’s GPS allowed me to follow along with the route, and indulged him when he asked, at least three times, “Where does it say we are now? … Now? …How about now? … Amazing!”
For this man, in fact, everything about me was amazing, from my university degree (a standard bachelor’s, nothing spectacular), to my full-time job, right down to the fact that I don’t live with my mother. He concluded that, like the afore-mentioned blind friend, I was a winning combination of blessed and, well, amazing. Due to my acute frustration and sleep deprivation, I was unable to appreciate his good nature and kindness, which I would certainly have noticed on an ordinary day.
The last straw came when we pulled up to my destination. As he assisted me with the debit machine, he skipped right past the “Tip Option” screen without asking me if I’d like to tip. Aware that cab drivers often do this instinctively—to the point where it stands out when they don’t try it—I had previously asked that he please stop at the tip screen. Ignoring my explicit instructions, he breezed right past it, and steadfastly refused to cancel and re-enter the transaction. Disregarding direct instructions when I’m letting someone else act as my eyes will inspire pique on the best days, and this was not my best day. By this point, the lack of caffeine and goodwill in my veins signaled that I should let this one slide. So, I let him go on his way, no doubt convinced he’d done me a kindness and blissfully ignorant of my annoyance.
Refusing to allow disabled people to express generosity is dismayingly normalized. Judging by the many conversations I’ve had with other disabled people on the subject, I’m far from the only one to find attempts at everyday generosity being rebuffed, sometimes forcefully, by all kinds of people. Even those asking for money on the street will sometimes push our money away, as though taking funds from disabled people would be a violation of their personal moral codes. Apparently, being homeless is still better than having a disability, and taking money from disadvantaged, less-fortunate souls is practically criminal. Who would accept gifts from such abjectly pitiable people, anyway?
I’m all too familiar with the prevailing narrative on disability in much of the world: anyone with a disability is disadvantaged, pitiful, and even cursed. People break the mould all the time, especially when they are accomplished enough to feature in inspiration-laden news stories, but no matter how successful we become, we are perceived to be worse off than nearly anyone else. The cab driver who laments he does not have enough money to feed his children will resolutely resist my offers of a tip I would otherwise spend on an overpriced latte I certainly don’t need. A person who does not have a place to sleep, food, or even a clean blanket is uncomfortable receiving support from me, even though I have every appearance of someone who is solvent, if not extravagantly wealthy.
There is a tiny nugget of truth in this stereotype, as with so many others. high unemployment rates, coupled with the extortionate costs of assistive devices and technology, mean many disabled people are indeed struggling financially. Some of us have incomes that are supplemented by government benefits, but most of us, myself included, are supporting ourselves without help. At the moment, my full-time job and freelance career are enough to give me a stable home, a nutritious diet, and the ability to afford the occasional luxury without compromising my student loan payments. That’s more than many of my nondisabled peers can say.
As with so many other disability-related issues, the problem runs more deeply than strangers who won’t take my money. I’ve written in the past about friends and family who, whether consciously or otherwise, shy away from allowing me to be generous. Whether they’re telling me not to help with difficult tasks or claiming they don’t want to burden me, even those closest to me are under the impression that I either have nothing to offer them, or at least should not be expected to give what I can. Having been raised in an extraordinarily open-hearted, unstinting community, the inability to participate in all the generosity around me was and continues to be a blow to my pride and spirit. My personality is characterized by a powerful need to give, and give lavishly, so any barrier that keeps me from doing so is emotionally devastating. While I do have people in my life who feel free to lean on me for support and will ask unhesitatingly for assistance whenever it’s needed, many others seem sheepish or even vaguely shocked at the very thought. It’s as though a voice inside them is saying, with not a little surprise, “You mean…*she* might be able to help *me* out? But that’s not how it’s supposed to go!”
I hope that, in time, strangers and friends will realize it’s possible to move beyond the paradigm where I am the helped and never the helper. I envision a society in which a disabled person’s tip or gift is seen as standard generosity and accepted guiltlessly. The world will be a slightly better, kinder place when people are open to the idea of a disabled person as more than a problem waiting to be solved or a good deed waiting to be done. In this, as in all things, I want to be no more and no less than everyone else.
Let me be generous. I have a lot to give.

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.

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.

“But…I Meant Well…”

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Ah, good intentions: everyone’s favourite get-out-of-jail-free card. It seems that you can get away with anything, as long as you were trying to be a good person. Every day, people excuse discourteous, disrespectful, and even dangerous behaviour because they “meant well.”

A stranger assumes a blind girl wants to ride the escalator, leading her onto it without explanation. Dangerous, but it’s okay, because she assumed she was being kind.

A mother rearranges her son’s entire apartment while he’s away, so that he doesn’t know where anything is when he returns. Discourteous, but it’s okay because she was just trying to help him out.

A teacher addresses her third grade class, assigning a student to play with the only blind member of the group. Humiliation (for the student) and resentment (from the rest of the class) follows. Disrespectful, but it’s okay because she was just trying to foster tolerance and inclusiveness.

I’ve said a hundred times that it’s okay to make mistakes. I’ve also reassured sighted people that their kindness is appreciated, even when it’s misguided. What I’m weary of doing is looking the other way when someone tries to cancel out the damage they’ve done by citing good intentions. I’ve witnessed people say and do terrible things in the name of “meaning well”, and I’m sick of pretending I’m okay with it. It’s not okay with me, and it’s not okay with the vast majority of blind people I know.

It seems to stem from the belief that any help is good help; any kindness is worthy of gratitude; and every time a sighted person deigns to do something nice, we should all be brimming with thanks. But what if we don’t really want that specific help? What if we like how our apartments are organized? What if we had no intention of going on that escalator, and could find it ourselves if we did? And what if we prefer to make our own friends, rather than having people assigned to us?

Generally, we know exactly what we want, and we’re normally okay with asking for it. This does not give us license to be demanding, but it does afford us the opportunity to choose which types of assistance we can benefit from and which we’d rather discard. You might think you’re helping me if you follow your charitable instincts and “fix” bits of my life for me, but the cold, hard truth is if I didn’t ask you to do it, chances are I didn’t want it done.

Still confused? Try a thought experiment. How would you feel, as a sighted person, if your mother came over one day and waited till you left to completely reorganize your home? You did not ask her to do this for you, and you definitely did not appreciate having to hunt for everything once you got back. It’s even worse for blind people, because it takes us so much longer to find everything once it’s been displaced. We occasionally use complex systems of organization, so moving our stuff around has greater consequences than you might imagine. That’d be fairly irritating, yes?

Let’s skip past the sheer inconvenience and danger of having yourself or your belongings tampered with in the name of good intentions. Let’s amble over to the area of respect, because it needs attention: if a sighted person treated a fellow sighted person the way they treat blind people, there would be uproar. You’d need an awful lot of nerve to go around messing with other people’s things in general, wouldn’t you? And you’d have to have even more nerve to grab a complete stranger without permission and direct them elsewhere, right? So why does overbearing and presumptuous behaviour magically become acceptable if the person in question is disabled? Is your need to do your good deed of the day more important than their need for personal autonomy? I hope not!

Most people aren’t consciously aware that what they’re doing is neither wanted nor appreciated, but I know an awful lot of people who have been warned, and warned again. Still, they persist. Parents and other relatives, especially, are notorious for this; they assume that whatever they’re doing is okay, even if they’re asked to stop. They mean well, and that should be the only thing that matters. Shut up and be grateful, why don’t ya?

It’s not acceptable. It never was and it never will be. If you want to flex your kindness muscles—and I recommend that you do, by the way—ask how you can help. Except in very, very special cases where a disabled person is in immediate danger, put your good intentions away and pull out respect. That is something I can be grateful for.