disability

How Do You … Stay Organized?

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This week, we have another post in the new “How do you…” series. As always, I’m wide open to suggestions!

How do you stay organized?

Uh-oh. I was afraid of this one.
Is this where I admit that I live in a constant state of organized chaos?
Okay, I lied…about the organized part. Basically I live in chaos. My life is chaos, okay? Happy now?
All right, so I do have some ability to keep track of my belongings, and since blind people spend a good deal of our precious time finding and identifying objects, I thought it made sense to address this topic today, squirmy as it makes me.
The key to relative success seems to involve a whole lot of consistency. If I, as a blind person, don’t put things back where I found them, I will never find them again (or, when I do find them, it’ll be because I tripped over them). Since I’d rather not spend my life rescuing items from the danger zone that is my floor, I use a combination of labels, technology, and complex organizational systems to ensure everything is easy to keep track of.
Labels are very useful, especially when I can use handy gadgets like the Pen Friend. The pen comes with special adhesive tags that you can attach to objects. You touch the tip of the pen to the label, hold down a “record” button, and speak your desired message aloud. Then, each time you touch the pen to that specific label, it will play back your message. I use this to categorize my vast tea collection, for example.
My memory isn’t what it was—a combination of medication and migraines has seen to that—but I still rely on it for simpler organization. I memorize which items of clothing make great outfits, and line up foods in my cupboards a certain way so I can prevent culinary disasters (like that time I almost used frozen berries instead of frozen peas).
Technology is more of a last resort: if my other systems have failed, or if I’m unable to identify something I’ve just purchased, there are mobile apps I can use to take photos of objects and have them identified for me. The process can necessitate a whole lot of fiddling, especially since one of my many weaknesses is taking awful photos, but it works well in a pinch.
Perhaps now my sighted friends will understand why it’s imperative that blind people’s belongings be left alone. If you reorganize or move our possessions without our permission or knowledge, you could inadvertently disrupt a complex system that will be difficult to straighten out. Besides the fact that leaving objects where you find them is an element of basic courtesy, failing to do so can throw us off for days while we struggle to put things right. Please, be careful and respectful when handling our things. We appreciate it very much.

Guide Dogs For All? Maybe Not.

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Ask just about any guide dog handler, and they will be happy to wax poetic about how much they love the experience. They’re willing to acknowledge that it’s hard work, and that it can be too frustrating for words, but it’s all worth it in the end, they’ll say. Their reactions are much the same as those of many parents: having children is stressful and life-changing, but it’s always, unquestionably worth it.
Since we only ever seem to hear from those who are living the guide dog dream (or those, like me, who choose to embrace the cane and nothing else), there’s a third group remaining mostly silent. This group includes two types of people. The first type consists of people who like guide dog travel in general but had a negative experience with a particular dog. The other type consists of those who drank the Kool-Aid, believed that having a guide dog is for absolutely everyone, and learned otherwise. While they may have adored their dogs and might not be opposed to trying again in future, they have come away feeling disillusioned, alienated and, in some cases, inadequate. Was it some failing of theirs that precipitated insurmountable issues? Could they have done more? Tried harder?
I want to tell the stories of just a few members of this underrepresented group. I want to extend their experiences beyond the scope of family and friends, so that they can be heard alongside the overwhelming joy from guide dog handlers everywhere. I don’t seek to take anything away from happy guide dog teams, but I do want to lift the voices of people whose stories have, I believe, been neglected for far too long.

Toeing the Party Line: Alicia’s Story

Alicia grew up with a cane in her hand, incorporating it seamlessly into her travel routine, and benefiting from comprehensive mobility training. Comfortable as she was with her cane, she thought as so many people do: true independence could only be found through a guide dog.
Believing that guide dogs were the only sensible option for independent blind people, Alicia never analyzed her decision to get a service dog. Her confidence was so deeply-ingrained that no other choice seemed viable, let alone wise. It was this belief, perhaps, that made her particular experience so devastating.
Once she completed high school, Alicia was matched with Dusty, a yellow lab with whom she bonded immediately.
Much as she enjoyed the smoothness and grace of dog travel, Alicia soon ran into trouble.

I started dealing with a struggle none of my other classmates seemed to be having. I found myself missing the tactile feedback that came with using my cane. I didn’t like the method of having to use my feet to search for the things I could have, in my opinion, found much more easily with my cane. When I brought this up to my trainers, they told me it was just part of the transition everyone went through.

Reassured, Alicia took Dusty home, and embarked on the stressful journey that is college. Predictably, the emotional and mental exhaustion brought on by so many simultaneous life changes affected her partnership with Dusty. She began leaving him at home here and there, relishing the freedom and confidence she felt only when holding a cane. She found caring for him burdensome, though she loved him dearly and refused to neglect him for any reason. She even began to miss the low-maintenance nature of cane travel.

I dearly missed being able to come back from a long day of classes and other activities, put my cane in the corner, and rest like I did in high school.

Finally, Alicia had to accept that she and her dog were both desperately unhappy. Though the decision broke her heart, she surrendered Dusty. She had no way of knowing what would happen to him, where he’d go, or to whom he’d be assigned, but she knew that she’d made the right decision, if not the easy one.

I don’t hear many stories like mine. In fact, I’m trying to remember if I ever have heard any other stories similar to mine. … A small percentage of the time, I wonder what was wrong with me as a blind person that it seems to work for everyone else, but didn’t work for me. However, most of the time, I realize that a dog is not the right choice for everyone, and I’m simply one of those.

Welcome to the Spotlight: Holly’s Story

Holly, unlike Alicia, did not consider a cane to be an extension of herself. Receiving regular mobility lessons as a child did introduce her to the art of cane travel, but not until her mid teens did she understand that she should probably start using one. Always comfortable and fearless in her own neighbourhood, Holly and her family saw no need for her to rely on a cane, and it was not until she grew too independent to tolerate constant sighted guide that she chose to use one full-time.
Struggling to find suitable mobility training with a cane, she resolved to apply for a guide dog, reasoning that she would then receive mobility training as a matter of course. It was the only way she could guarantee the independence she craved.
Thrilled by the power mobility training gave her, Holly went on to be matched with a dog. The training went well, but Holly soon discovered that no matter how much you enjoy travelling with a service dog, you’ll have to make some sacrifices.

I got my dog, and the first year was incredibly stressful. I’m not shy, but I am not especially sociable. I don’t like strangers, I don’t like talking to people in public unless it’s a planned event. I want to move through the world quietly the way most people can. And I had no idea that getting a guide dog would prevent me from doing that.

As Holly spent more time with her guide dog, she discovered that blending in was now impossible. She couldn’t go about her business unnoticed or unencumbered, because “the public won’t let you.” She was forever fielding questions that were centred only on her dog, as though she was just a “vessel” attached to her dog’s harness. When she wasn’t answering questions, she was telling people off for feeding, touching, and distracting her dog. The strain took a serious toll on Holly.

It was terrible. I cried most days. I hated being so visible, and yet utterly invisible all at once. I hated that I’d undergone this huge personal transformation and yet nobody saw me as a person.

Distraught, Holly considered giving up her dog, though conversations with her father, who was a dog handler for the army, persuaded her to be patient. Wait a year, he suggested, and if she was still unhappy at the end of it, she could return her dog.
Holly has chosen to persevere, but she acknowledges that it’s hard to “come out” as someone who doesn’t love being a guide dog handler.

We have this awful culture within the blind community where we can’t be honest if owning a guide dog actually feels a bit shit. It has to be sunshine and rainbows or you’re a failure.

When the Dog is the Problem: John’s Story

Not all guide dogs are perfectly suited for the job. Every dog has flaws—they’re not robots—but some have quirks and tendencies that make you wonder why the school allowed the dog to graduate.
John was an unfortunate victim of this circumstance. He was pleased by his dog’s guidework, but it was overshadowed by an unfortunate vice: “My dog is a poop-eater.”
In contrast to Holly’s and Alicia’s stories, John wasn’t new to guide dogs. He worked with his first guide for over eight years, and had no reservations about getting a second one. He was matched, and began training soon afterword.
When John was told that the dog liked to eat poop, he was a bit concerned, but didn’t waste excessive energy being anxious about it. He was certain that, with patience and persistence, the issue could be resolved. What is more, the trainer agreed to help with the process.

The instructor agreed to monitor the dog while he was in training. … For the most part, the dog behaved himself for the week and a half that I was with the instructor. Over time, I learned that not only would the dog eat poop, but he would also eat nuts, pinecones, grass, and everything else that was inedible.

The situation only worsened. John’s dog progressed to eating his own waste, which was quite a problem in enclosed spaces like John’s apartment, where the shag carpeting suffered most (no other carpeting was available, and cleaning it was a nightmare). Still, John remained admirably optimistic.

After eating poop, he would often vomit on my apartment carpet several hours later. At first, I found the whole thing disgusting, but felt upbeat and determined to solve the problem.

Calling the school was not as helpful as he’d hoped. He was told that disciplining the dog was nearly impossible, because John would have to catch the dog in the act—a tall order if you can’t see what your dog is doing. To add to the fun, he was also informed that there was virtually no disciplinary measure he could take, as shock collars and other items would not be effective, either. He was left with only one option: a mouth guard. Unfortunately, that didn’t go so well.

I purchased [a mouth guard]at a Store and used it, but two things happened. First, the dog just lay on the ground and did not move when he had it on during playtime. Second, when he did see another dog doing its business, he ran over and shoved the mouth guard in the waste meaning that I had to clean up his face and the guard. At this point, I began feeling both helpless and frustrated. Why was I given a dog with such a severe problem?

As awful as he felt for himself, John also sympathized with his dog. Would the dog have to be constantly restricted when playing or roaming grassy areas? How healthy would his confinement be for him? Another desperate call to the school only led to advice like “Oh, just play with him inside only.” However, the dog lost interest in this quickly, leaving John with few options.
Eventually, John gave up his dog.

I felt sad after he left, because he was truly a good worker and great companion. But I also knew it was the right thing for the dog and myself. After the initial wave of sadness past, I felt relief. I was glad the whole ordeal was over. I also felt a mix of frustration with the school and sorrow that a $30,000 dog only got a year and a couple months of use as a worker. I even felt the need to apologize to the instructor when he came to get the dog. I know how hard his puppy raisers and the team at the school worked to raise him, and I felt bad that all that work would be for nought.

While John may not be disillusioned with the guide dog experience in general, having been successful with it in the past, he has certainly been the victim of the guilt and humiliation inherent in giving up a guide.

While crowd-sourcing stories for this blog post, I was asked, rather confrontationally, what the purpose of the post might be. I suppose this person thought I was running a smear campaign against guide dogs—I don’t know, I didn’t ask. What I do know is that writing this post was an exercise in empathy and compassion, not bitterness or spite. I’m not publishing this post to put force behind my own refusal to get a guide dog. This is not a case of me saying, “See? See? It isn’t always perfect, you know!”
My aim is to expose people to both sides of this complicated choice. For many, guide dog travel is a dream come true. It’s more liberating than they could ever have imagined, and they would never go back to any other mode of travel.
For others, the situation is more complex and far less satisfying.
Here is what I ask: if you have read this post all the way through, and have identified with the stories herein, exercise caution when encouraging people to get guide dogs. Ask relevant questions to ensure the person you’re speaking to is in the right place—geographically and emotionally—for such an enormous responsibility. Make sure that your encouragement is based on thoughtful consideration, not societal expectation or the warm glow given off by your own positive experiences.
I ask, most importantly, that you be gentle with those for whom guide dog travel isn’t the best choice. Be compassionate. Do not assume that, if it doesn’t work out for them, it must be their fault. Don’t quiz them for hours on end about what they might have done to improve the situation unless you have compelling evidence that there was neglect or abuse involved. (Advice is helpful; judgment is not.) Place pressure on schools to provide necessary after-care and supports when things go awry.
Here’s the gist: you do you, and let them do them, and all manner of things will be well.

It’s The Little Things

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So often, it’s the little things that spark my frustration. True, the broad, sweeping issues matter more in the grand scheme, but the minor, day-to-day irritations eat at me the most. Instructions I can’t read, inaccessible features of a website, people asking rude questions–these annoyances burrow beneath my skin and make me curse my disability (or, more accurately, the way the world treats that disability).
There’s another side to this, however. Just as I’m most ruffled by the tiniest details, so too am I cheered by equally inconsequential things. A door opened at just the right time, a person taking the time to describe an image, information provided in an alternate format—these are the gestures and accommodations that remind me the world is not falling apart. No matter how hopeless I feel, how acute my frustration, how black my outlook, there will always be some mundane occurrence or other to soothe my spirit, at least for a while.
My fundamental mistake, I think, is failing to acknowledge these happenings and give myself the space to be grateful. It’s easy to express gratitude for the landmark victories and grand gestures, but I’m less likely to stop what I’m doing and spend a moment simply appreciating the good that’s quietly and often anonymously done in the world each day.
My regular readers know just how averse I am to trumpeting positive mantras and ignoring uncomfortable truths. Disability advocacy is still sorely needed. The world has a long, long way to go before the personhood and humanity of people with disabilities is fully recognized and integrated into society’s structure. So many great leaps have yet to be taken, and there are a thousand battles left to fight. I’m aware of this, and so are fellow disabled people.
Yet, for my own well-being, I’m compelled to devote more energy to revelling in the simple kindness and thoughtfulness of others. Thanking a developer for prioritizing accessibility is, for now at least, just as important as calling another out for failing to do so. Writing social media posts about kindness, generosity, and hope should be as habitual as writing about injustice and prejudice. Venting my frustration is necessary, but expressing gratitude is necessary, too.
Even as we tell others how they have done wrong, we ought to tell them how they have done right. They may not listen or even care, but if we don’t give people the tools to improve, they never will. If we censure fellow disabled people, we must also build them up, for we all walk the same path.
I won’t close my eyes and make believe that the good outweighs the bad. I won’t ask anyone else to do that, either. Keep calling out what’s wrong in the world; your voice is vital, and if we do not speak, no one else will do so for us. In your own life, though, among those you come into direct contact with, focus on the good, as well. If a stranger does something you like, tell them so. If a disabled peer does something of which you approve, let them know.
Yes, we need to be watchful. We mustn’t become complacent and hide in a cocoon of warm, fuzzy feelings. That doesn’t mean we wouldn’t benefit from a few moments of happiness now and then, though.
So, take a moment. Think of the last time someone understood you, or supported you, or treated you the way you want to be treated. Reach back to that point—I hope it wasn’t too long ago—and remember how it made you feel.
Don’t forget.
It truly is the little things…

Breaking The Social Media Chain: Stop Pasting, Start Caring

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“One like = one prayer!”
“Scroll down and type amen!”
“I know many people don’t give a hoot about…”
“I know 97% of people won’t post this, but my real friends will!”

I think it’s safe to say most of us have seen these copy-and-paste chain statuses. They’re shared by well-meaning people who have fallen for the slacktivism trend—that is, they’ve been tricked into believing a boilerplate Facebook status will inspire positive change. This isn’t to say that the people sharing them don’t care deeply enough, or that they don’t play a significant role in their offline lives, but it’s worth unpacking the reasoning behind these posts to ascertain their usefulness.
Awareness is a great buzzword, and it makes people feel as though they’re accomplishing something just by hitting “post.” While social media can be a powerful tool, this isn’t the best way to use it.
First of all, these statuses employ a confrontational, aggressive tone. Claiming that most people “don’t give a hoot” about serious illnesses and disabilities is unlikely to win people over. Whenever I see this, it irritates me and makes me want to scroll right by. These posts often go on to say that only “real” or “true” friends will repost, as though anyone who doesn’t is an unfeeling, poor excuse for a friend. Each time I see this type of statement, my instinct is to declare that my true, real friends would refrain from posting these at all. If the many snarky parodies all over my news feed are any indication, I’m not the only one who feels this way.
Sharing these posts comes across as inauthentic. It only takes a line or two for me to realize my friend did not, in fact, write it for themselves. It doesn’t sound like them, and doesn’t even seem to fit their personality. Since it doesn’t align with who I know them to be, I’m less willing to spend time reading it. I try to fill my Facebook feed with people who interest me, and while it’s wise and sometimes even necessary to share the words of others, copying and pasting a generic rant about real problems and “true” friends seems out of place and careless. I’m happy to get behind a cause that my friends care deeply about, but in my opinion at least, these posts don’t convey sincerity.
These statuses devalue the power of thoughtful, specific posts intended to raise legitimate awareness. A personalized message from one of my friends is much more likely to influence me than a template some stranger developed—especially when it’s clear the original poster had little grasp of how best to persuade people to listen and act. Sure, the unusual combination of aggression and warm fuzz garners plenty of attention and millions of shares, but does it really result in anything lasting or meaningful? I’m doubtful. (If anyone has any actual data on this, I’d be genuinely interested!)
Last, and perhaps most importantly, these chain messages don’t demonstrate anything other than a person’s ability to copy and paste. It takes almost no effort to do this, and even less thought. It’s so easy to hit a couple of buttons and feel as though you’ve made a real difference in the world, especially when you’re rewarded with likes and shares. In the end, though, all you’re doing is helping a chain letter spread to as many corners of the internet as possible. Maybe sharing does raise genuine awareness and maybe it doesn’t, but it’s not enough to change your status—you need to prove you care, too.
If you want to do some tangible good, reach further than a Facebook post. Seek out friends who are suffering and let them know you’re thinking of them. Instead of “liking” a status in lieu of a prayer, why not go ahead and say an actual prayer? (I don’t know that this does any good, but it’s still preferable to hitting a “like” button and calling it a day.) Donate to charities you believe in; sending money to a trusted organization is a lot more useful than addressing popular causes in vague terms on Facebook. If you don’t have the money to donate, use your social media reach to promote those charities instead, so that others can support them. Speaking from my own experiences, I benefit far more from a phone call, text, or thoughtful blog post than a wordy, spammy Facebook status. I do write a blog, and I do use my modest online presence to raise awareness, but I also do my best to strengthen, encourage, and bolster people as individuals.
My words shouldn’t be interpreted as an attempt to disparage social media or awareness campaigns. I began this blog in an effort to reach as many people as possible, and social media is the chief way in which to do that. I write to inform the public, so likes and shares do make a difference. Sometimes, engaging with your friends, family, and wider network is your only option, especially if you lack money and political clout—and I definitely lack both.
So, it’s not a sin to post these things, though be warned that many of your Facebook friends will find them very annoying. It’s okay to use your social media profile to spread awareness of causes you care about. I urge you to broadcast the voices of those who are experiencing illness and disability. We appreciate when allies signal-boost us, because it might be the only way to be heard.
As you do this, be conscious of the limited good social media can achieve. Never fool yourself into thinking that social media is the best or only way to make an impact. The world needs more than good intentions and viral content. We need comfort, friendship, solidarity and concrete assistance. We need people to write to political representatives; donate to organizations that help us; remind us that we’re not alone; and ask open-ended questions about what we need on an individual basis. Improving our lives is best accomplished by employing us, dismantling societal barriers, and offering us your shoulder when we need it most.
So, share away, by all means. Your social media platform is yours to use as you will; I’d never dispute that. I simply request that you consider the impact of what you post before you post it, and ask yourself whether you could be doing something else—something more productive.
Scroll less, pray more.
Paste less, write more.
Share less, give more.
Most of all, be there for the people who need you. Your little area of the world is where you can do your best work.

Dear Web Developers: You’re Out Of Excuses

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It’s been one of those days—a day that makes me want to shut down my computer and hide under a quilt to cry. It’s barely noon, and I’m already utterly fed up. If I had chocolate, I’d be binge-eating it; if I had wine, I’d be guzzling it.
Fellow disabled people will understand the kind of day I’m having: it’s the kind during which almost every single task I try to accomplish online is blocked by accessibility issues.
I encounter accessibility roadblocks all the time, though they usually have workarounds. I’m so used to them that I hardly give them much thought, and don’t waste much of my limited emotional energy on being annoyed with them. They’re a fact of life and, while I do report bugs and encourage web developers to improve, I’ve worked to embrace a positive, patient attitude when it comes to navigating the internet. Most days, I’m just grateful that I can access the internet at all. Sure, I get snarky, but generally I would rather help than condemn.
On days like these, though, I’m less philosophical. Smothering my frustration when I ran into yet another inaccessible capcha became increasingly difficult, and when I tried to report the issue using the site’s contact form, I discovered that the “submit” button wasn’t accessible either. At that point, I realized I had no chill. None. I searched for it, willing it to return, but I’m thoroughly, disproportionately discomposed.
I get it: accessibility isn’t always intuitive, and many developers are self-taught. They learn as they go along, and mistakes like these are almost inevitable. While I’m not a developer myself—I’m proud when I manage to use html correctly—I can imagine that accessibility might not be covered well in school, either. During a course on web design and online information architecture, my class received one short lesson on accessibility—just enough to explain what accessibility actually is and why it’s important, but not enough to provide insight into how it can be accomplished. There was little mention of accessibility tests, plugins, consultants, or basic handbooks. Few practical solutions were discussed. In other words, the lesson focused on awareness only, without providing a solution to the issue it raised. How useful is that? Well, it’s not useful at all.
So, yes, I understand that inclusive web design may not come naturally to a budding developer. It also might be challenging for a veteran because web accessibility has evolved considerably. As people with various disabilities speak out about what they need, accessibility becomes more comprehensive and, therefore, more complicated. I don’t pretend to know all there is to know. I’m not even close to that point yet.
Still, as in so many areas of life, ignorance is not a justifiable defence. It’s 2016, and accessibility guidelines are one click away. I’ve just performed a basic Google search, “web accessibility,” and the entire page of results is filled with helpful articles ranging from the most basic to the most advanced. Surely even beginners can take at least a few steps to ensure their websites are as inclusive as possible!
I’ve concluded that my frustration is fuelled by years of feeling like a burden when I asked developers to fix some problem or other. I was often treated like an unreasonable user who was asking for the moon, and I became accustomed to that. With notable exceptions like Apple and Buffer, my requests for improvements have often been ignored or dismissed. Several companies have lost my business entirely because I literally could not use their services anymore.
I’m growing weary of explaining that accessibility is not a privilege, but a right. I’m sick of reiterating that, no, accessibility is not about doing us a “favour.” I’m desperately tired of insisting that while ease of use isn’t mandatory, accessibility certainly is.
Developers need to add accessibility to their core values. They need to stop lumping accessibility into a category alongside perks, special features, and enhancements. They need to stop reducing it to a public relations stunt, designed only to generate glowing publicity. They need to consider it standard, not extra. Making your site accessible should be framed as the least that can be done to provide a satisfactory user experience. Companies like Apple, which include accessibility as a matter of course as often as possible, shouldn’t be as notable and praiseworthy as they are. What they are doing should not only be common, but normal. Expected. Fundamental.
So, developers, please listen: you are running out of excuses. You can’t claim ignorance; there is too much information out there for you to do that. You can’t hide behind pleas that you don’t have the time or the skill; accessibility plugins abound, and the simplest steps you can take are ones so easy to implement that even I, not tech-savvy by anyone’s standards, can figure them out. You can no longer classify accessibility as optional. Unless we’re talking about visually-based games, for example, there is no sufficient reason to leave a button unlabeled or an image undescribed. By failing to take these essential measures, you’re effectively shirking your responsibility to your users.
For now, we have workarounds. We have specialized software to help us circumvent accessibility challenges. We have extensive experience, accessibility consultants, and countless developers who are already on the right track. All is not bleak. Much of the internet is mostly, if not totally, accessible, and it’s getting better all the time. But …
I’m done making excuses for you. I refuse to apologize when I can’t access features of a website. I can’t in good conscience allow you to view my access issues as an inconvenience. I’m no longer going to defend your ignorance, your unwillingness to take the time, or your belief that I’m asking too much. Developers, I’m not asking a lot. I’m merely asking that I and fellow disabled users be able to access your website. That’s it. I just want to create an account, browse your services, and maybe even give you my money and share your content. I’m happy to help. I’ll cheerfully act as a beta tester. I don’t mind reporting bugs and offering suggestions on how to make your site better. I understand the difference between “inaccessible” and “imperfect.” When it comes to helping you make your site more inclusive, my time is yours.
Until you recognize that it’s time for change, however, I will no longer give you a pass. If you have the resources to make your website eye-catching and flashy and exciting, you definitely have the ability to make sure it’s usable, too. Karl Groves puts it more eloquently than I ever could: accessibility problems are “quality problems,” and nothing less.

The Cult Of Positivity: 9 Inspirational Mantras I’m Very Sick Of Hearing

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Everywhere I go, the magic of positivity is being touted. It seems that people think it can solve everything. Just smile, recite your affirmations, and will your problems away.
A positive outlook is helpful, and even necessary, but realism is equally helpful. While I know there are good intentions behind this movement, it’s not always what we need.

The only disability is a bad attitude.

Certainly a negative attitude is disabling, but no matter how glowingly positive you can be, it won’t influence employer attitudes, cure chronic illness, force the world to become accessible, or eliminate prejudice in a single bound.

Work hard and you’ll succeed.

C’mon, we all know this is patently untrue, right? Hard work is almost always required, but there are other things to consider, like luck, privilege, the nature of your disability, and the size of your network. In my experience, people who believe this are those who have either gotten lucky or have never known what it is to have the deck stacked against them.

All you need are positive mantras.

For some types of people, mantras don’t work and can even make things worse. Affirmations are great and all, but they’re not instant solutions. This isn’t The Secret: you can’t attract good fortune and happiness just by scrunching up your nose and wishing really, really hard. (Try it. I’ll wait.)

If you believe in yourself, others will, too.

Really? Reeeeeeally? You definitely have to have confidence and faith in your abilities, of course. That’s a given. We know we’re capable. We know we deserve an equal chance to prove ourselves. We know society doesn’t often give us the opportunity to show that we’re contributing members of society with as much to bring to the table as nondisabled people. This platitude is so absurd that I can’t even say much about it besides, um, … reeeeeally?!

If you want something enough, it will happen.

This is a very damaging thing to say, even if it’s meant to encourage people to keep the faith and commit to their aspirations. I can get behind that. If you don’t try, you won’t ever succeed. I just can’t ignore the fact that it’s almost entirely false, though, not to mention that it makes a ton of assumptions. Remember that old saying: you can want in one hand and spit in the other, and see which fills up first? Yeah, that.

If you’re polite and kind, you’ll influence people.

When I started the blog, I set out to be kind. I still maintain that kindness and empathy are underrated and they serve me well for the most part. The thing is, this line of reasoning makes it sound as though, with a smile and a gracious response, nondisabled people will immediately understand and change their perceptions and behaviours. It’s really rather astonishing that people expect this to actually work across the board. Few marginalized groups ever got anywhere by being nice all the time. Besides, I wasn’t put on this earth to educate people whenever they demand it. I enjoy it very much, but it’s not my purpose.

If you were more positive, it might cure you.

This is so offensive and short-sighted that I don’t even know what to say about it. People are always proposing outlandish cures for chronic pain or mental illness (and they love the idea that prayer will fix my broken eyes), and it makes my blood boil. It places the burden on us, as though the only thing keeping us from banishing our disabilities is our lack of faith.

If other disabled people can do it, you can, too.

This one drives me insane. It’s inspiring to watch fellow disabled people achieve great things, and it can spur others to try pushing the envelope, but everyone is different. You can’t assume all disabled people are the same. No one would say to a nondisabled person, “I know someone who can do ___, why can’t you?” We acknowledge that people in general have different strengths and diverse circumstances, so why doesn’t this apply to disabled people? (Personally, I found this statement demoralizing, and it made me feel terrible about myself for a long, long time.)

If you’re in a bad situation, just fix it.

This is a statement that is often put forward by people with disabilities, who assume that every other disabled person has the same advantages they do. It’s an awfully privileged thing to say, and it’s not very helpful besides. Believing that someone should just “figure it out” is often the result of a “pull yourself up by your bootstraps” mentality that simply won’t work for everyone. If you’re too poor to move to a more accessible city, unable to learn skills due to a lack of available instruction, or unable to afford an education, that shouldn’t reflect badly on you the way many disabled people seem to think it does. This is not an excuse to give up entirely and expect your life to improve. Yes, it’s important to explore your options and be creative—the world won’t hand things to you—but saying that someone can always “fix” their lives is condescending as all get-out, and discouraging as well.
Positivity has its place, and we shouldn’t forget that. Unfortunately, it’s currently in fashion, and it doesn’t look like it will be calming down any time soon. All you can do is ignore what’s useless, take what is useful, and find your own balance.

When It Happens To You…

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It happened on a bus. I was sitting near my boyfriend, who is not fully sighted but whose vision loss is not noticeable to the average passers-by. An older woman began talking to him, and my mind drifted a little. I was jolted back to earth, though, when I heard her say, quite sweetly, that it was “so nice of [him]to take care of [me].”
There it was.
I knew it would happen sometime, I really did. I’d heard so many stories from other blind people who had sighted partners. I’ve commiserated with them, thinking I knew how it felt because people had made abstract statements of that kind to me. I’ve basically heard it all: you need a husband so he can take care of you; you can’t raise kids or manage daily life without a man; you need to choose a sighted partner so he can keep you safe–and on and on.
It turns out that I was wrong about one crucial element: an abstract statement, no matter how offensive, is far less upsetting than a well-meant but deeply personal one–and it wasn’t even directed at me!
I tried to break it down. After all, I knew this was coming. My previous partner had been totally blind, so we never encountered this situation, but as soon as I began dating my current boyfriend, I expected it. So if I knew it would happen, and had helped so many others bounce back after it happened to them, why couldn’t I anticipate exactly how much it would hurt?
In the end, besides the fact that I am an independent person who takes care of people as often as they care for me, the tone and style of her words were my undoing. This woman thought she was being kind. She simply wanted to commend this nice young man for what she considered exceptional strength of character. Her intentions were pure and I’m certain she did not understand that it might be the wrong thing to say–let alone harmful to the girl in question. I know all this, and yet…
I think it comes down to feeling like an object. The conversation did not include me, strictly speaking. I was not being spoken to, but about. This woman’s casual praise concerned me at least as much as it concerned him, but I don’t believe I was really meant to participate at all except to agree emphatically and gaze at him adoringly for the next few minutes. I was merely the tangible, living example of my partner’s essential goodness and compassion.
Now, he really is a wonderful human being, and sometimes having a blind girlfriend does involve offering a little extra assistance. We travel using sighted guide, for example. Other than a few relatively minor adjustments, we function as any other couple would. My blindness isn’t usually on my mind, and I doubt it’s on his either.
I know this–know it down to my bones–but I still feel insecure, hurt, and embarrassed when someone assumes otherwise. I found this particular incident so unsettling that it took me a few minutes to calm down fully, and I regret to say that I did not respond to her comment with as much grace as I should have. True, I tempered my “I take care of me–he really doesn’t…” with a smile, but I don’t know how effective my attempts to cover my shock and indignation really were.
So, okay, it was a difficult experience. It was humbling, because I thought I could handle such a thing with minimal effort. I believed I was near-impervious to this sort of thing, only because so many fellow disabled people had dealt with it first. What’s the big deal?
Ultimately, this is my takeaway: you cannot know how something will feel until you go through it. Guide dog handlers might be sure of their reaction when they experience their first access refusal, hoping their conviction that it’s wrong will carry them past anger or humiliation. Disabled people who are denied a job based on discrimination can’t know just how painful and frustrating it will be before it actually happens. A student cannot predict their emotional response to being barred from a course because they are deemed unemployable and unteachable until the moment it occurs. I know this, because I’ve been through the last two examples and witnessed numerous people go through the first. My experiences mesh with theirs: it’s easy to empathize; it’s much harder to deal with these situations when they’re directed at you, and only you.
So what can I do? What can we all do?
First off, we can avoid assuming we have such a firm handle on our emotions. We can choose not to claim we know how we will feel until we find out the hard way. We can definitely prepare for the eventuality, and do our best to steel ourselves against what we know we’ll face at some point. Even as we do this, we must be mindful that all that preparation might fly out the window when we need it most.
The more important step is to support other disabled people even more wholeheartedly than we have before. It is not enough to stand by and comfort them. We must avoid minimizing their feelings or pretending we can know what they’re struggling with if we genuinely do not. It may seem like we understand a situation intimately, but there’s just no replacement for first-hand experience.
Going forward, I’ll apply the lessons I learned from this encounter, while continuing to embrace the compassionate view I’ve tried to nurture all along. At the end of the day, I know I must not forget that this sweet woman’s only goal was to praise what she considered to be a small pocket of good in an increasingly dark landscape. She actually went on to say that we made a good couple. She wasn’t trying to hurt anyone, and while I know her viewpoint is wrong and even unhealthy, I can’t change it, not for now. All I can do is move on, let it go, and practice resilience. I hope that, next time it happens, I’ll be ready.

Hello Guilt, My Old Friend…

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After months of being unemployed (or underemployed, if you count sporadic freelance gigs), I finally got a full-time job. I have, for the first time in my life, gainful, permanent employment. I have achieved what I’ve been hoping for, and it feels indescribably satisfying. I feel grateful, even though I earned the job. I interviewed quite well. I conducted extensive research on the organization before coming in, and proposed plenty of ideas which the interviewers seemed to love. I dressed well, spoke confidently, and wrote a cover letter of which I can be just a little bit proud. I had the necessary qualifications, useful background knowledge, and a passionate interest in the organization’s work. In short, I did everything right. I was, I think, offered the job on merit, and the accommodations I’d need were treated as a matter of course, not a burden.
I probably shouldn’t feel grateful at all. Nondisabled people don’t generally feel lucky when they get a job. If they’re qualified, they probably feel, if not entitled, then at least deserving. There’s no question of whether they can actually do the work; it’s assumed that they can until there is evidence to the contrary. Gratitude has a place in my life—quite a significant one, really—but it’s not something I really want to be feeling right now. I’ve been lucky, yes; in the current economic climate, just about everyone struggles to find work. Still, I did the legwork and I think the organization will continue to see me as an asset.
There’s another emotion that is harder to ignore though, and I consider it far more toxic. I feel overwhelming guilt—guilt that I, who have only been searching for a handful of months, got a job so soon. I feel guilty that my supervisors have absolute faith in me, never seeming to regard my disability as anything other than a personal trait. I feel guilty that a bachelor’s degree and scant experience were enough to land me the job, when far more qualified veterans of their fields couldn’t find a job if they begged. Most of all, I feel guilty that my highly-experienced, educated, and talented disabled friends are still out of work, still searching frantically, still wondering how they will make mortgage payments.
Again, I know guilt is not something I need to feel. None of my disabled friends would dream of resenting me. They are far too happy for me to feel something so petty. They’re overjoyed that I’ve found employers who value and respect me, and they’ve all emphasized how proud I should feel. (I don’t deserve my friends, I really don’t.) If anyone, disabled or otherwise, felt envy or resentment, they’ve hidden it well. The only person feeling anything other than pride and happiness is me.
From what I’ve gathered, this is a very normal emotional place in which to be. Disabled people have often confessed guilt when good fortune befalls them, no matter how hard they worked to be successful. So much of life is governed by luck, which is why people like me can find work and other, far more worthy candidates cannot. Yes, I slaved for my degree, and yes, I have an impressive-looking portfolio, but I’m certainly not the ideal candidate for most jobs. Yet here I sit, employed and happy.
I know better, but some dark, vindictive part of me thinks, “How dare you? How dare you rejoice when your friends are struggling? How dare you tell them all about your job and how great it is when they’re attending interview after interview without success? Are you so callous that you can enjoy your good fortune when people you love aren’t so fortunate? Really, how dare you?”
I’m doing my best to ignore that malicious little voice. I know full well that my happiness in no way robs others of opportunities. I know that my success will not hamper anyone else’s, and that the most productive, sensible course of action is to throw myself into the work and support my unemployed friends as well as I can. I know all this, but knowing a thing and believing it are two very different things.
I hope that I, and others in my position, will learn to eliminate or at least ignore these feelings of guilt. They are a waste of energy, and can even lead to self-sabotage if they are strong enough. There is no need to feel guilty, and certainly no good can come of it.
If you’re out there, and if you’re listening to that nasty little voice inside your head, do your best to tune it out. You are allowed to be happy. You are allowed to feel blessed without devaluing your effort and talent. Seriously, you’re allowed. Be there for your peers, give them a shoulder to cry on, and help them in whichever ways you can. That, friends, is all you need do.

A Conversation With Keri: How fibromyalgia Changed Her Perspective On Blindness

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During my first year of university, I was afflicted with brutal and frequent migraines. Since I already suffered from chronic tension pain, this new development was a devastating blow. I began to experience stroke-like symptoms; I missed classes and struggled to meet deadlines; I shuddered to think what might be wrong; and I refused to reach out.
While I have been able to detect the source of the migraines and manage them well now, I’ve never forgotten how cripplingly disabled I became while under their power. Blindness had always made life challenging, but I’d never been so completely incapassitated by broken eyes. Invisible disability, which so many people fail to understand, taught me a great deal about myself and others. I learned never to underestimate pain, or assume I knew every battle a person might be facing.
Keri suffers from chronic pain–pain that can be far more disabling than any form of blindness, and she’s graciously agreed to share her story with us.

Q: Can you tell us a bit about your life before chronic pain began to affect you?
A: It was nearing the end of September back in 2014, and my life was pretty typical. I was in my second semester of college, I had a great boyfriend, and life was good. I was happier than I had been in a long time, even though I had lost my sister just two months before. I was hopeful about my college studies, and ready for Christmas break like any other typical college student.

Q: When did you first realize something was terribly wrong?
A: It was a Wednesday night, and I was relaxing on my loveseat, and gaming after a typical day of classes. I was happy to be free for a little while from boring things like Experimental Psychology, and to be doing something I love: gaming. Suddenly the calves of both of my legs started hurting. I have a high pain tolerance, but I was almost in tears. I stood up to get a few alieve, thinking it was just some kind of bone pain or some such, but it was no bone pain I had ever had. As soon as I stood, the pain got twice as bad, and if it wasn’t for the loveseat right there, I’m sure I would have ended up on the floor. It was disabling, and the worse pain I had ever experienced. I only made it through that night quite honestly by the grace of God, and my boyfriend staying on the phone with me for a good while, even though I had woken him up. I made it to school the next day, but barely. I could hardly walk, and I felt as if my legs were being torn apart.

Q: What exactly is fibromyalgia?
A: The most common question I get is what is fibromyalgia? The best way to define it in my opinion comes from Mayo Clinic, and they define it as the following.
“Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.”
There is much research that still needs to be done, and many in the medical community or society in general think it is fake, or something they just tell you when you can’t figure it out. This is the most frustrating part.

Q: Do you feel that your condition affects how you see blindness compared to how you viewed it before?
A: I always felt that blindness was a pain in the ass, and I took the fact for granted that it wasn’t as big of a deal. When the pain started, it really sank into me how blindness isn’t as disabling as it seems. Sure I handled it well, and accepted my blindness, and it has its very frustrating parts. It is a piece of cake compared to pain.

Q: Most of us are already acutely aware of how hard it is to find work when blindness is present. Do you know to what extent your pain will limit your employment opportunities?
A: When people first meet me, or if they don’t know me well they always say things like you are so amazing, or I don’t know how you do it. If and when they find out that I suffer in pain constantly I think that perception may shift.

Q: Does being called inspirational bother you, especially when these terms are applied by people who have never dealt with what you experience every day?
A: Yes it does. I don’t feel that I’m inspiring at all. I have been dealt an unfortunate hand in life, but I make the best of it. I’m just a woman doing what it takes to survive, and make it through. I do the things I want or need to do.

Q: Do you have any advice for others going through chronic pain?
A: My best advice is to have a great support network, because you need it. You need those who can deal with the ups and downs. Find good doctors who listen to you, and who can help you find a pain management plan. Try anything you are comfortable trying, because each case is different. If you are in school be honest with your professors, or if at work, your boss. Sometimes these people can also be a great support network, and help with accommodations. The best advice is take me time, because if you don’t you can never re-centre yourself, and sometimes that really helps with the pain, especially if you are stressed.

Q: Finally, if you could say one thing to nondisabled people who don’t understand you, what would it be?
A: Have respect. You never truly know someone’s problems until you have been in their shoes. Try your best to not pretend like you know what they’ve been through when you haven’t. Be as flexible and accommodating as best you can. We are just normal people, with differences, and we should be treated like human beings.

Chicken Soup For The Nondisabled Soul (And Why You Won’t Find It Here)

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Along with being asked why I’m so angry and negative, I’m also advised, by disabled and nondisabled alike, to be more positive. Sure, I’m allowed to write about exploitation and discrimination, but why am I not serving up more feel-good, inspirational content? Where’s the comfort food? Where’s the acknowledgement that the world is, at its core, full of decent people who just don’t understand me? Where?!

I know what so many people want: they want chicken soup. They want brief, digestible, guilt-assuaging content that reminds them that life is essentially good, no matter what. People certainly enjoy rage-fuel, and my passionate posts receive far more attention than my sweet little gratitude pieces, but there is still, it seems, a demand for what we in the disabled community lovingly call “inspiration porn.” You know the stuff—content that portrays disabled people in a light most pleasing to the nondisabled eye.

In these pieces, we are courageous, steely individuals with more guts and gumption than anyone else would ever need (and the drive to use them). These pieces highlight inspiring people who have achieved ambitious heights, shattering expectations with an appealingly musical crash. They are high-powered athletes, successful entrepreneurs, survivors of devastating illness and injury, or astonishingly talented superstars. They have “overcome.” They have “transcended.” They have “made it.” Life as an everyday (boring, tragic) disabled person is a battle, and these unicorns have “won.”

The rest of us? Well, nobody really wants to hear about us unless we’ve been thrown out of a restaurant for having a service dog, or been paid less than minimum wage by Goodwill. The stories the public seems most attached to are the ones where a disabled person is either beating the odds in the face of adversity, or standing proud and unflappable after shameful treatment.

These reassuring bowls of chicken soup are not just favourites of those with no disabilities. They’re also beloved by many in the disabled community, who are convinced that the only right way to be disabled is to reach newsworthy goals. There’s only one acceptable narrative, and if we don’t fit neatly into it, we’re doing life wrong. We’re “surrendering.”

The only way to get the world to care about how we are mistreated is to uplift them. Make them admire us, and after that, maybe they’ll come around to respecting us as well. You know, eventually.

I like a good story as much as the next person. I’m proud of my disabled peers, who work hard and weather fierce storms along the way. I admire and respect their strength, knowing they wouldn’t have to be so strong in a different, more accessible world. I laugh and cry with them, exulting when they succeed and commiserating when they fail. I celebrate with them when they win big, and hold space for their anger when society fails to recognize who they are outside the default disability narrative of struggle. I share empowering stories when they do particularly well, so that others will know they are more capable than many might imagine. Inspiration is not, in itself, toxic, and positivity in moderation is indeed excellent nourishment for anyone’s soul, disabled or otherwise. The blog has been, I hope,  a vehicle for empathy and understanding as often as advocacy and education.

We need to be vigilant, though, because it’s so tempting to conform to the expectation that demands we remain brave and heroic at all times. Living our lives does not necessarily require heroism, and we deal with disability because there’s no alternative, not because we’re superhumanly strong. The public doesn’t know that all the way down, though, not yet. If we don’t pay attention to how we are portrayed by popular media (and judged by each other), we will inadvertently place strain on ordinary disabled people simply trying to live their lives.

Not every disabled person is brave at all times. Not every disabled person will soar to new, hitherto unexpected places. Many of us will stumble, and fail, and give up, at least temporarily. Many of us will live quietly and contentedly, just like the majority of nondisabled people. We need to remember that it’s okay to stumble. It’s okay to falter. It’s okay to break away from the inspirational mantras circling in your head long enough to remember that you are not obligated to feature in the Huffington Post. Your life is meaningful because it is yours, and is not made less meaningful if you never break a glass ceiling or awe the masses. Plenty of people go through their whole lives without doing anything of note (I expect that will be my own lot, and I’m okay with that) and they’re still perfectly happy. You deserve an accessible, welcoming environment whether you’re “making a difference” or going quietly about your business. Our deeds do not render us eligible or ineligible for decent treatment. Having a disability or illness does not have to shape your personality or desires. Being brave and strong should not determine whether you deserve the struggles you’re up against.

Reach for the stars, if that is what you believe you should do. Don’t succumb to the doubts and misgivings of others. I’m the last person to limit you. While you’re aspiring, just keep in mind that you don’t have to function as living chicken soup. If you want to be ordinary, if you feel too exhausted to be strong at all times, or if you fail spectacularly, know that it’s an acceptable circumstance and, while you can always get back on the horse, you don’t need to be inspiring while you do it.

If you need to cry, to rage, to crumple, please do. Gather your support system close and let them carry you for a moment. You’re allowed.
In short, you do you.

Looking for chicken soup? Sorry, I’m fresh out.