Month: August 2017

The Sanctity Of Vision

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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 I grew up in the shadow of pity, outdated ideas, and low expectations.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.

“Wait…You Work Here?”

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About a month ago, I was charged with covering reception at my workplace. We were severely short-staffed that day, but in small non-profits, everyone pitches in. Our clients are used to seeing unfamiliar staff members covering the desk, and it’s common enough that it never raises eyebrows. When I sat behind the desk, however, everything changed.
Instead of asking me questions about how to send a fax or print in colour, clients asked, often openly and a little confusedly, “Do you…work here?” Many of them avoided the reception desk altogether, knowingly violating protocol and striding past the desk without so much as a by-your-leave. They’d quiz other coworkers milling about in the reception area, even when those coworkers encouraged clients to speak to me directly. At times when I managed to engage with them and ask them what they needed, they expressed a preference for the intern who had been with us less than a month and knew maybe a tenth of what I did about how things are done. Although the intern was nervous and visibly uncomfortable, clients chose to wait and interact with her rather than dealing with a long-term staff member who had a visible disability. After only one short hour in reception, I realized that having worked at this non-profit for almost a year, sitting confidently behind the desk, asking people directly if I could assist them, and being dressed as professionally as anyone else working there—none of it mattered. People just assumed I was either incompetent or not an employee at all. (I don’t know whether they believe my workplace routinely allows non-employees to sit behind the desk for fun. I didn’t ask.)
In a move that was a little twisted even by the cruel universe’s usual standards, I was stopped in my apartment building a few days later by a fellow tenant I’d never spoken to before. I was clearly in a rush, walking briskly, and doing my best to ensure I wouldn’t miss my ride to work. Ignoring every signal I was blasting frantically to the world at large, this inquisitive woman started to pepper me with questions.
“Hi. Where are you going today? I see you leave here most days. Always wondered where you go.”
“I’m heading to work.”
“You work?!”
“Yes, yes I do.”
“Like, every day?”
“Five days a week.”
“Where?”
“At a small non-profit.”
“Oh! Which one?”
The interrogation probably would have continued, but I was able to extricate myself by pleading lateness and managed to escape before snapping at her with much more irritation than she’d have deserved. It’s not a crime to ask questions, and I’m not one of those who will eviscerate someone for daring to try it, but having strangers ask you where you go every day and the exact location of your workplace seems a little dodgy, disability or no.
As with almost every other disappointing situation I’ve experienced because of disability, I soon realized I was far from alone. While discussing the matter with others, I heard several accounts of blind people being mistaken for non-employees who had strayed into forbidden areas, or who were merely assumed incapable on sight. Sighted people are used to seeing us sitting at a piano or acting in feel-good, promotional videos, but a blind person sitting at a desk or standing behind a counter seems to be a bit more of a leap for them. Fellow blogger Blindbeader has been stopped twice now at her new workplace, where she was warned by strangers that she was going the wrong way and was trying to enter a secure area. Only when she flashed her security badge and explained she was an employee did the people in question re-evaluate their assumptions. Apparently, even a professionally-dressed, confident-looking blind person looks lost and out of place in a work environment, at least to some people out there.
This type of unconscious discrimination can have more serious consequences than mild annoyance and inconvenience. While working as an intake assistant at CNIB, I conducted most of my consultations with clients by phone, so they readily listened to and respected my advice without question. When they’d walk into my office and meet me for the first time, though, some of them, even people who were going blind themselves, would do an astonished double-take, hard pressed to believe the helpful, knowledgeable woman they’d spoken to on the phone was blind. My partner, who has a moderate eye condition that is sometimes visible, was frequently discriminated against at work in retail and food service fields, despite his capabilities. While working for a fast food restaurant, coworkers were quick to blame any mistakes on “the blind guy,” and management was a little too quick to believe them. When he worked at a computer repair shop, customers would request to work with a different technician, or complain about him to his coworkers, because they thought it glaringly inappropriate for a person with even mild vision issues to be employed there. Their complaints are perplexing to me, since his vision issues are minor enough that he doesn’t usually use accessible devices and never uses mobility aids. He’ll never drive, it’s true, but he can certainly repair your computer and even read your screen without help. To this day, reliving these experiences makes him uncomfortable and anxious, and it’s easy enough to understand why. Hard as we work to convince interviewers and supervisors we deserve to work alongside everyone else, we still have to face the hurdles put in place by public and peer perceptions.
I didn’t realize how prevalent this casual discrimination actually was until I entered the workforce at age eighteen. At one point, while trying to comfort a distraught mother whose teenage daughter had just gone blind, I found myself explaining to her that, no, her daughter’s life was not irrevocably ruined. Yes, she’d be able to go to school, and have a career, and be successful. In a moment of weakness for which I don’t blame her one bit, she burst out: “How would you know? You’re just saying that!”
“Actually, Ma’am,” I said as gently as I could, “I’m blind, too. I’m getting a degree, and I have good career prospects. Many of my blind friends are very successful in their fields. It’ll be hard, no question, but your daughter’s going to be okay.”
So, if there are those out there who honestly believe blind people are destined for lives spent at home being cared for by our unfortunate families, and cannot aspire to anything higher, it makes sense that they’d react oddly when confronted with blind professionals. All manner of superficial attributes make people seem more or less trustworthy and credible, right down to appearance and voice. Why, then, should it be shocking that a visible disability would, however unjustly, decrease a person’s credibility in a stranger’s eyes? It’s not fair, and it needs to be combatted, but it does make a kind of sense. At least, it’s no less illogical than thinking tall, deep-voiced people are more credible than short, higher-voiced people with the same qualifications and credentials. The world is a vastly illogical place.
My solution to this issue mirrors the one I default to in so many other cases: education, education, education. The more blind professionals are seen out in the world, the more accustomed to us society will become. People’s minds do change, and I know a few who, since having met me, have altered their perspectives on a great many things. No more would they stop a blind person in a hallway and automatically presume they don’t belong there. No longer would they avoid seeking help from one of us if they found us behind an information desk, or repairing their computers in a shop, or cooking their food in a restaurant.
As usual, the way is long, and slow, and sometimes painful—but it is, I think, the only way we have.