Month: May 2017

Dear Facebook: We Need To Talk

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Facebook, honey, we need to talk. Seriously. This very instant.

I think I’ve been a good and faithful servant—I mean, user. I spend lots of time with you, usually every day, and have done so for several years. I have continued to check in with you daily despite the useless updates, the bewildering user interfaces, the sudden and unsettling amendments to your privacy statements—even your silly app, which enjoys draining my phone’s battery and sucking down data as though it were water in the desert. Through all of your confusing, outrageous shenanigans, I have done my best to navigate your bizarre design and even tolerated your overabundant ads with minimal grumbling. (I really, really enjoy grumbling, so please acknowledge the magnitude of my sacrifice. … Are you acknowledging? … Good, thank you.) In fact, Facebook, I love you so dearly and so faithfully that part of my current career depends rather heavily on interacting with you. I’m a social media specialist, Facebook, which means I have to work with you—and like it!
But, dear Facebook, you’ve shown me time and time again that you never really appreciated me. Yes, yes, you’re “free and always will be,” I know. I get it. I’m the user, not the customer. I’m the product. You sell my oh-so-exciting online life for far more than it ought to be worth, just so I can skip intrusive “suggested” posts to get to the good stuff. It’s business, this is the new normal—blah blah blah.
Still, darling, you’d think I might be worth almost enough to you, as a loyal user and frequent poster, to warrant a reasonably accessible environment. You see, Facebook dear, my eyes don’t work, and as such, you are an unpredictable and cruel companion.
One day, some complicated function works, and the next day you’ve broken it—again. Your much-lauded image description software—you know, that feature that meant we blind people would be able to “see” pictures—thinks dogs are cats and cats are dogs and any woman wearing white is a bride. It invents children that aren’t there and sometimes throws in an extra person, just to keep us all on our toes.
(“You got married? Again?”
“No no, I’m just wearing a white shirt. As you were.”)

I’ve lived in valleys of despair and soared to dizzying peaks of hope, perhaps a little naively. When you kept your mobile site clean and relatively accessible, I rejoiced. Alas, I rejoiced too soon: many of the features I wanted to use simply don’t work. Back to the sluggish, semi-inaccessible and wholly-infuriating desktop site I go, then.
I sang your praises when you introduced artificially intelligent software that would describe images, and the publicity it generated was very exciting indeed! Back to earth I drifted when I realized that not only was it laughably unreliable, but you were actually making sighted people think their days of describing pictures (very short-lived—I’d just gotten people to start doing it) were over. So, thanks and all, but please stop telling sighted people they don’t have to describe their pictures, cuz they do, maybe more than ever unless they want me to congratulate them on the new cat-dog or ask how married life is treating them.
I reveled in the simplicity of your Messenger app, reasoning that if you were going to get us all to use it by brute force if necessary, it may as well work. But, Facebook, you managed to break even that, so that I can’t scroll with any efficiency and am forced to ignore a whole lot of pointless nonsense on my cluttered screen.

This is not healthy, Facebook. At this point, I am staying for the good times, as they say. Each time you break accessibility or introduce a troublesome new feature, I grit my teeth and roll with the punches. When I struggle to perform basic aspects of my job because something on your end is mysteriously broken again, I smile through the pain and soldier on. If time is short and I don’t have an hour to fiddle with two versions of a website and an app, I call a sighted person over to help, silently cursing my dependency.

Meanwhile, you announce your access team with much fanfare and profess your commitment. You whisper (or shout, as the case may be) reassurances into my weary ear, promising that all will be well.

But you know what, Facebook? I don’t believe you.

Do I expect any of this to move you? No, of course not. You have me in a corner, and I must continue to shoulder the constant issues you create. My job and social life depend upon us getting along.
That said, dearest Facebook, I don’t have to like it.
And you know what? I don’t have to like you, either.
There, I said it. I love you, but I don’t really like you anymore.

Put your money where your mouth is. Use the same level of force to direct your accessibility team as you do to ensure that customers—I mean, users—use your ridiculous apps. If you put a fraction of the effort you pour into, say, the like button into accessibility, darling, we’d have a very different relationship, you and I.

So, Facebook, I ask only this. Until you make real, lasting strides in the direction of genuine usability and accessibility, please don’t pretend you care, because I’m done pretending I believe you.

Yours, very grudgingly,
A girl with broken eyes (and a broken heart)

In Praise Of My Mother

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It’s been a long time since I’ve posted something warm and fuzzy, and I think Mother’s Day is a perfect excuse to do so. I was blessed with terrific parents, and what better way to honour them than with a blog post?
Today, I write a tribute to my Mom, who taught me the meaning of strength and perseverance, even when you’re tired and you’re frustrated and you just don’t wanna.
Don’t worry, Dad: yours is coming in June.

“It hurts to be beautiful,” my mom would say as she pulled my unruly hair into a ponytail, “now hold still.”
I did not want to hold still, however. I wanted to read a book, or run around the yard, or sing to myself in a corner. Ultimately, I wanted to do anything but sit, unmoving and docile, while my hair was tugged and twisted and manipulated in ways I was sure must violate some kind of child abuse law.
“I don’t want to be beautiful!”
“Yes, you do,” Mom would mutter distractedly through the pins in her mouth.
“What’s the point? I don’t care what I look like.”
There it was: the argument that was difficult to win when dealing with a blind child who treated “girly” like a curse. I was usually okay with playing dress-up and so on, but when it came to the everyday agonies of making oneself presentable, it took me a lot longer than I’d like to accept that, even though my own eyes didn’t work, other people’s did—and what they thought mattered.
Even if I’d been an obliging child, raising me would not have been easy. Mom’s responsibilities extended far beyond wrestling me into some approximation of “well-groomed” after all. Raising a child with a disability meant both my parents were forced to recognize that sometimes life simply isn’t fair. Having a blind child, though challenging, was probably the least of Mom’s problems. Society has always gone out of its way to shame mothers, and Mom was not exempt. If anything, raising a disabled child actually made her more vulnerable to it. More than once, another mother has told her that, had I been their child, I’d have turned out better—more independent, perhaps, or more competent, etc. In these cases, Mom, who is a far nicer person than she has to be, has simply shrugged it off, reasoning that “if they knew what it was like, they wouldn’t be saying that.” Let’s just say I’m glad I won’t be having kids; I don’t think I could be half so tolerant.
Yes, having a disabled child means that several parents you meet, regardless of how ill-informed and inexpert they may be, will feel comfortable telling you all the ways in which you’re messing it up. Some are so confident that they’ll insist they could do it better, and as the parents who actually know how difficult it can be, mothers like mine are left to shake their heads and get on with it.
Then, there is the mama-bear instinct to channel or suppress, whatever the case may be. The world is a cruel place, and Mom had to come to terms with the fact that not everyone wanted to make that world easier for me. She had to learn that we live in a world where a teacher could tell her, to her face, that she should be grateful I was allowed to go to school at all. She had to listen to me cry while dealing with accessibility issues and unsympathetic educators, all the while knowing that this was the new normal. She was forced to stand by while a potential employer refused to hire me solely because I would be defenseless against armed intruders (yes, that is the excuse they used). She had to understand—and I imagine this is an ongoing process—that my life was going to be a little harder than it should be, and that she could not shield me. Instead, she’d have to let my independent spirit do the shielding, while offering support from the sidelines. There is a time to be your child’s fiery advocate, and a time to step back and let her figure it out. It’s a hard lesson to master.
There is so much we owe to our mothers, whether we are disabled or not. While all mothers have plenty of trials to face, I believe mothers of children with disabilities, illnesses, and other traits that make them seem abnormal to the rest of society have an especially heavy load to bear. Mom gets extra points for dealing with me; sadly, I can’t blame my difficult daughter status on blindness, as convenient as I’d find it.
So thanks, Mom, for shouldering all of these things while managing to treat me like a “normal” kid, and raising my sighted sister at the same time. Thank you for putting up with my grumbling long enough to make ponytails and take me clothes shopping and all the other unspeakable tortures about which I was so vocal. Most of all, thank you for keeping your head up when society wasn’t kind. Being a mother is tough when all the odds are with you, and you didn’t have that luxury.
Happy Mother’s Day, Mom.

If you haven’t yet done so, give your mom a call and thank her for whatever special gifts she’s given you over the years. Moms like it when you call.

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.)