The Sanctity Of Vision

There appears to be consensus among humankind that blindness is an objectively undesirable fate. I’d tend to agree, since while I live a full, satisfying life with blindness, it’s not a circumstance I’d necessarily have chosen for myself if someone had given me a say. I grew up in the shadow of pity, outdated ideas, and low expectations. More than once, strangers have insisted they’d be completely incapacitated if they lost their sight, even temporarily.
Not until adulthood did I comprehend society’s primal aversion to blindness. It goes beyond the ineffable fear of being disabled, straying into a territory governed more by bone-deep horror than reasonable discomfort. Of course most people wouldn’t welcome the thought of becoming disabled. Sight is a primary source for sensory input, so people’s instinctive panic when contemplating blindness, even as an abstract concept, falls within the lines of what I’d consider logical.
What I struggle to understand is the extent to which so many people, even medical professionals, avoid blindness at all costs. After a few people had expressed, to my face, the opinion that they’d rather resort to suicide than live without sight, I began to realize that vision and quality of life are inextricably linked in ways I, a person who has been visually impaired from birth, cannot possibly imagine. As it turns out, while I’m out there enjoying my life, people I pass on the street are thinking of me as someone who isn’t really living at all.
The idea shed its abstract quality when I met my dear friend Alicia. As an infant, Alicia had her eyes removed to save her from an aggressive cancer that, if left unchecked, is often fatal. Eye removal, while drastic, seems like the best possible choice—maybe the only choice—when confronted with the possibility of death, but not everyone saw it that way. Alicia’s journey through cancer and blindness has taught me that far more than the sanctity of life, the sanctity of vision is king.
This is her powerful story, in her own words. I hope you will read it, put aside primitive assumptions, and re-evaluate the way you perceive those of us who don’t have vision but who do have life, in all its richness.


Off and on while I was growing up, I heard the claim that society fears blindness even more than cancer. I think the first time I heard this phrase, it was based on some study that had been done–a national survey of some kind, but I was young enough at the time that I didn’t inquire into insignificant details such as sources or methodologies. My youth was only part of the reason I disregarded the information, though. Just as strong was the fact that I found this statement unbelievable. How could people fear blindness, something which can be lived with, over cancer, something that can so easily take one’s life away? Impossible…Or so I thought.
My rude awakening has come in various forms over the years. The first incident occurred in 2002. I had been considering having a tubal ligation, because I already knew I did not want children. I certainly did not want to pass retinoblastoma, the cancer I was born with, on to a child. At an appointment with my ocularist, he told me about a baby undergoing treatment for this same cancer. The doctors knew that the amounts of radiation being given were likely causing brain damage to this child, but both they and the parents refused to consider the option of removing the child’s eyes. Risking brain damage, not to mention leaving cancer in an infant’s body, all because the doctors and parents feared blindness so much? I was devastated. I cried for several hours, and made up my mind that very day that I would have my tubes tied as soon as possible. There was no way I was having any child of mine treated in a medical system that valued vision over life itself. I don’t think I realized until that day the tremendous service my parents had done for me in making the choice they did to have both of my eyes removed as an infant rather than leave cancer in my body. My respect and gratitude to them for that choice increased by leaps and bounds that day. Only then did I learn that they had actually had to push my medical team to do this. I always thought it had been the recommended option, because it was the one that made sense and posed the least risk to my life. Apparently it was not, and my parents had to lay down the law as my guardians for this to be done.
After my tubal ligation, this issue moved to the back of my mind until 2015, when I attended a mental health First Aid training session. The trainees were split into groups. Each group was given a list of traumatic events that a person might experience in life, and asked to rank them from least to most catastrophic. Two of the items on this list included being diagnosed with cancer, and vision loss. As the results came in, every single group ranked vision loss as the most catastrophic event a person could experience, with cancer diagnosis placed several items down the list. Once again I was shocked, especially given that many of the people in the room knew me personally. Did they truly not understand that blindness could be lived with, and lived with well? Did they really pity me that much, or believe my life was that terrible? I asked to address the room, and made my case for why I truly did not understand these rankings. I hope I gave people some food for thought, but I’ll never know for sure.
People’s tendency to value vision over life has come to my attention yet a third time in the last few weeks. A dear friend of mine has been diagnosed with a different kind of cancer of the eye, ocular melanoma. The tumor, which is particularly large, rests behind and within her eye. Thankfully it has not yet metastasized, but if it were to do so, the most common place for this particular cancer to spread is the liver. As most people know, short of Divine intervention, once it reaches that organ, a person’s days are numbered. The options for my friend were to radiate the tumor and attempt to save the eye, or to have both the eye and the cancer removed in one surgery, with follow-up appointments over the years to make sure she remains cancer-free. She spoke with two nationally renowned cancer hospitals, and got two very different opinions. One cancer hospital said they would outright refuse to remove the eye, considering this option medical malpractice. Again, I was shocked, though by this time, I don’t know why. It wasn’t like this information was new to me. Removing cancer from a person’s body is medical malpractice, but leaving it inside the body in order to keep an eye is not? The other cancer hospital was forthright with my friend regarding the risks and side effects of radiation, even though it has advanced in precision and effectiveness over the years. This hospital’s staff was honest about the fact that even with this option, there is only a 20 to 30 percent chance of saving the eye. After much thought and prayer, my friend felt her best option is to have the eye, and thus the cancer, removed. Sadly, she has had to push her medical team to accept her decision. At least she is an adult, and is able to advocate for herself and choose what should be done to her body. Children born with cancer do not have this choice, and must rely on the discretion of a medical community that tells people that blindness is a much worse fate than cancer and its treatment.
This philosophy continues to stagger and upset me today as much as it did when I first became aware of it 15 years ago. What is it about our society that makes people fear blindness over the potential loss of life? What can we as people who are blind do to change these perceptions? Is there, in fact, anything we can do? Will this philosophy ever change? These questions will likely remain unanswerable. For my part, I can only do what is within my sphere of influence. In the case of the friend mentioned above, my example has been part of what helped her realize that vision loss could in fact be lived with, and that she can and will adapt. If I can help one person know this, then perhaps my own experiences are not in vain. I just wish there were more I could do to show the medical community this truth. Do I wish blindness on a person? Absolutely not. There are days when it is extremely hard to deal with, when I curse the lack of accessibility, or the transportation issues it causes. There are days I am sad not to see colours, or pick up a print book and read it. However, at least I am alive to have these problems.
All things considered, I would much rather have life, with the inconveniences of blindness, than no life at all.

Advertisements

Dead Ends: 6 Battles I Refuse To Fight

I’m a fan of healthy debate, and since I can see grey in just about every conceivable area, I’m all for engaging with everyone about nearly every topic. However, I’m finding it progressively less useful to engage with certain types of people, who continue to pick fights with others about debates that should, in my opinion at least, have been retired long since. Some perspectives are simply too antiquated, inaccurate, or unconstructive to be worth examination, and today I’ll present a few of the arguments I’ve promised myself I will never become embroiled in again. Part of a healthy lifestyle is knowing which battles to fight and which are lost causes, and this is a list of arguments I believe we need to put to bed, once and for all.

1. Cane versus guide dog: travel is intensely personal, and any cane vs. guide dog debate needs to account for individual preferences, needs, and abilities. Guide dogs offer numerous advantages, but they are not the only efficient mobility tool. Some blind people don’t like dogs, dislike guide dog travel, feel more confident with a cane, and/or are unable to afford a dog. Additionally, canes offer their own advantages. You don’t need to feed, relieve, or plan your schedule around a cane’s needs, and the cane provides tactile feedback some blind travellers, like me, consider essential. So, however you might feel about it, please stop arguing with people about which is better. Instead, focus on the advantages and disadvantages of both, leaving it up to each blind person to decide for themselves. Blanket statements and definitive answers simply aren’t useful, so there’s no point in resorting to them.
2. The duty to educate: I have always valued my ability to educate able people, and am usually open to answering questions and spreading accurate information. Education is one of the primary purposes my blog exists, and was the original reason I began it at all. I don’t align myself with those who insist it is every disabled person’s duty to educate, though. If you enjoy it, and find yourself routinely annoyed by people’s ignorance, then you should certainly raise awareness and answer as many questions as you’d like. If you’re more concerned with going about your business unencumbered by other people’s curiosity, or if you just don’t like putting yourself or your ideas out there, by all means refrain from doing so. Ultimately, you are the only one who should dictate how you spend your time, so I hope people will eventually stop squabbling about duty and purpose and obligation.
3. Public versus mainstream education: I spent grade school and postsecondary school in mainstream education—that is to say, I attended publicly funded institutions and did not generally receive specialized education tailored to blind students. The only school for the blind in my country was too far away to be a viable option, and in any case I preferred to be integrated into the sighted world as much as possible. I’ve heard horror stories about schools for the blind. People talk about lowered academic standards, inadequate enforcement of social skills, abuse that went unchecked, and a serious lack of encouragement when it came to helping blind people prepare for independent living. By contrast, I’ve heard other students praise their schools, having learned valuable skills mainstream schools usually cannot teach, and being among people who understood them and their struggles intimately. My own experiences with public school were mixed. I had to balance the benefits of inclusion with the severe lack of resources my rural school was able to procure. All in all, I don’t think it’s useful or wise to argue back and forth about which type of education is objectively better. The reality is that the subject is too varied and too personal to debate properly, so while it’s fair enough to pick apart the merits of specific institutions, making general statements demonstrates a disregard for nuance that seldom does any good.
4. Sighted versus blind partners: I covered this topic extensively in previous posts, and that’s the last I really want to say on the matter. It’s all very well to discuss the merits of dating both types of partners. Blind partners are able to understand us on a gut level, which can be enormously comforting. Sighted partners are typically able to provide assistance, such as driving us around and helping us navigate unfamiliar areas, which is an awfully nice perk. I fail to see the point of telling fellow disabled people whom they should date. Regardless of personal preference, we shouldn’t be meddling in anyone else’s love life. Let people exercise agency, because goodness knows able people love to badger us as it is. Promote freedom of choice, and otherwise keep your nose out of other people’s romantic lives.
5. Language policing: this is another topic I’ve covered before, and once again, it’s an argument I refuse to revisit. It’s one thing to be sensitive to other people’s wishes and keep up with the evolution of language, but when you are describing yourself, do so however you see fit. No one—and I do mean no one—has any right to insist you should change or criticize you for using incorrect labels. You are in charge of your self-concept and identity. Don’t let anyone convince you that you’re “doing it wrong.” Everyone is entitled to their opinions, but that doesn’t mean you have to listen.
6. Doing blindness the right way: there is no such thing as “doing blindness wrong.” Really, there isn’t. There are harmful behaviours and unwise practices, but disability is just a personal trait. Just as there’s no right or wrong way to be queer or female, there’s no wrong way to be blind. That doesn’t mean you’re above reproach and should be insulated from criticism; part of a community’s job is to watch out for each other and call each other out, but anyone who tries to claim there’s only one way to live this life is hopelessly narrow-minded. They can share their definitions of a life properly lived, but you don’t have to care.


Do you find yourself sick to death of any dead-end arguments? Feel free to share them in the comments; I’d love to hear them.

How Do You … Coordinate Your Clothing?

Lately, the blog has focused more on introspection than education, so it’s high time I returned to that theme. This week, I’ll introduce a new series of explanations on how I accomplish certain tasks as a blind person. I get so many questions on various topics that I think I’d like to devote a short series of posts to them, so in addition to regular posts, I’ll be writing this series as well. If you have questions or suggestions, please get in touch!
While I cannot speak for all blind people, and may not use the best techniques out there, there is enough public interest that I feel posts like this will be of use to someone (and may cut back on the zillions of questions I answer while trying to go about my business)!

How do you coordinate your clothes?

Dressing well is one of my top priorities. I’ve never been a fashion enthusiast, and I tend to favour comfort and utility over style, but I still value my appearance. Few things make people take me more seriously, both professionally and personally, than a well-chosen outfit. There persists an unfortunate stereotype: the sloppily-dressed blind person, wearing inside-out tops, unsuitable combinations, and mismatched socks. (This last is okay, in my book, mind you.) Since this is what so many people expect from me, I’m careful to prove them wrong.
I’m fortunate to live in a time when blind people are no longer universally advised to dress as neutrally and uninterestingly as possible. Taking risks with clothing, making fashion statements, or seeking individuality is no longer as discouraged as it once was. The public may still look at unusual outfits and assume that the poor blind person was just clueless (God forbid we exercise agency when we dress unconventionally), but we’re working to abolish this notion. We are realizing, as a collective, that we have every right to experiment and embrace our own sense of style. We don’t have to restrict ourselves to a dull, uninspired wardrobe simply because we can’t see.
So, how do I do it? I tend to cheat a little: I have enough usable vision to discern at least some colours, so this helps me keep track of which colour combinations I’m using. Understanding on a gut level which colours clash is never something I’ve been able to grasp, but I can at least go along with conventional wisdom.
One important thing I do is solicit feedback from sighted people I trust. Going shopping with someone whose eyes are fully functional reduces anxiety and helps me choose clothing more confidently. Learning to prioritize my preferences over other people’s opinions is still a struggle for me, as I have too little faith in my sense of taste, but I’m working on balancing sighted people’s opinions with my own instincts. I’ve been criticized for my love of ankle-length skirts, for example, but when I actually wear them, people realize they suit me well. Colouring inside the lines isn’t always the best choice, I promise.
Finally, I tend to choose clothing that’s both diverse in style and easy to coordinate. I go for dark-coloured skirts and pants so that I can wear virtually any colour of top and get away with it. I used to avoid anything that wasn’t black or white for fear of messing up, but I now experiment with brighter colours and more interesting outfits. My other strategy is to pick clothing with a distinctive fabric or shape, so I can distinguish, say, a yellow tank top from a white one. One day, I may have to use special tags or clothing labels to keep my wardrobe organized, but for now my memory works best.
Do I make mistakes? Absolutely, but more often than not, I receive praise for being so well-dressed. That’s good enough for me.

It’s The Little Things

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…

Hello Guilt, My Old Friend…

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.

Acknowledgements, Thanks, And Praise

Well, today’s the day: this is my one hundredth post on Where’s Your Dog. Some of you may be surprised to find out that I never, ever thought I’d reach this milestone.

This blog began, not as a noble attempt to educate, but as a combination of joke and experiment. I’d been talking about blogging for years, even before I’d known about the disability blogosphere, but I never imagined I’d actually go through with it. I always said I’d call it “Where’s your dog?” just to highlight the absurdity of stereotypes in general, and in a fit of inspiration one day, I went ahead and entertained the idea. Next thing I knew, Where’s Your Dog had taken off, and here we are.

Instead of writing the usual content today, I decided to stray into meta territory and thank the many people who have supported me throughout this project, and who I expect will be with me for as long as it lasts.

First, thank you to those who encouraged my writing, always, and were the first to pounce on my blog with enthusiasm. Family, friends, and teachers were chiefly responsible for the existence of this blog–as well as my writing career in general–and I cannot express how grateful I am for their steadfast faith in me.

Next, I want to thank the contributors who have offered quotes, ideas, and whole blog posts to enrich my own writing. You’ve given this space a diversity and depth I could not achieve on my own.

Bucketloads of thanks are in order for all those who have shared and commented consistently during the last two years. Whether you tweeted an article here and there or read faithfully each week, I am aglow with happiness when you take the time to read and share. The sheer volume of support from all quarters humbles me every day.

I must take a moment to thank readers who, even when they were complete strangers to me, went out of their way to write to me personally and tell me how much they enjoy the blog. At least one reader overcame shyness to write to me, and for that, I’m supremely grateful.

Finally, I must acknowledge those who lend me space on their own blogs. Blindbeader has been kind enough to link to me often, and promote my work as though it were as important as her own. So, to all the bloggers who have boosted my blog: I thank you from the bottom of my considerable heart.

I hope my readers will stick with me. I don’t know how long this journey will be or where it will take me, but I hope to see you all there at the end of it.

Age, Sex, Location, … Eye Condition?

“So…what have you got?”
“How…how did it happen?”
“Have you always been blind, or…?”
“So, what’s your eye condition? Mine’s ___.”

These are common icebreakers, coming from sighted and blind people alike. They are sometimes probing questions—people love a tragic story—but they’re usually well-meant attempts to start a conversation. It helps them start somewhere, especially if blindness is a novelty for them. It’s perfectly understandable that blind people would also ask these questions. They’re looking for solidarity and common ground. It makes sense.

Increasingly, however, I’ve grown weary of answering the questions. People have posed them before they’ve even bothered to ask my name, as though my blindness is the only immediately relevant detail. Others zip through the usual pleasantries, then lean forward in a confidential way and ask, in hushed tones, how it happened. In all these cases, I’m left feeling just a tiny bit miffed. While I’m happy enough to answer general questions, my eye condition is the least interesting fact about me, in my opinion, anyway. I’d much rather spend time chatting about my career aspirations, musical interests, and even the weather. Discussing these points makes me feel less like a novelty and more like an ordinary human. Worse, focusing on my eye condition gives me less to work with when I try to get to know you, especially if you are sighted. Throw me a rope, if you can, because discussing a disability you don’t have doesn’t give me much of a springboard.

I’ve noticed another variation of this tendency, wherein I mention a new blind person my sighted friends or family have never heard of. Almost invariably, the first thing out of their mouths is “Oh, what’s their eye condition?” I’ve seen people become annoyed and even frustrated when I draw a blank.
“Do you know…I don’t think I even asked.”
“You’ve known them for how long and you don’t even know that? Isn’t that sort of a basic thing to know?”
“It just…never came up.”

Yes, I have friends I’ve known for years whose eye conditions I either never knew, or forgot somewhere along the way. While I can usually tell you how much vision they have, if any, it’s a challenge for me to remember the exact details.

Why am I incurious? I don’t really know, but I do know I’m not the only one who isn’t very curious and who doesn’t really think it’s an important thing to know about a person. A friend was venting recently about her family’s obsession with eye conditions, after which she guiltily remarked that she could no longer recall mine.
“Don’t worry,” I said, “I doubt I even told you.”

Is it a sin to break the ice this way? No, of course it isn’t. Are there better, more tactful ways to get to know someone? Absolutely. While many blind people are amenable to discussing their eye conditions, you might have a more enjoyable conversation if you investigate their personalities and interests rather than the specifics of their blindness. Just a tip.

So, friends, I challenge you to go forth, break thou some ice, avoid mentioning eye conditions, and see what you discover.