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 I grew up in the shadow of pity, outdated ideas, and low expectations.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

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#AbleistScript: Pointless Venting, Or A Sign Of Hope?

For the uninitiated…

If you’ve been hanging out on Twitter lately, you’re likely to come across the #AbelistScript hashtag. The hashtag is meant to gather tweets from all kinds of people, detailing all the ways the able-bodied have said hurtful, offensive, and discriminatory things. It sounds sort of pointless and bitter, doesn’t it? It’s a bit of an outrage fest, no? Well…

The tweets are incredibly disturbing

This hashtag has revealed far more than the typical “Hey, Helen Keller, where’s your dog?” nonsense. It has revealed deeply unsettling stories—stories most of us would rather ignore. Some “ableist” people are innocent, but misguided.

Some people are shockingly presumptuous and uninformed.

Some lack tact and respect, even when dealing with loved ones.

Some, of course, are downright offensive.

Scary, isn’t it?

It’s more than mere outrage fuel

It’s viral, and for good reason: it is a medium through which we can come together and express the things that make our blood boil. It’s an opportunity for us to release some of the tension, helplessness, and frustration many of us have been bottling. Some of us have kept quiet out of courtesy, or the fear of burdening people. Others are afraid to be perceived as whiny or high-maintenance. Still others feel ashamed of their anger. Do they have any right to be upset? Are they being unjust? Is their suffering legitimate? Are they just “easily offended,” “thin-skinned,” or “obsessed with political correctness?” I’ve no doubt that some people are, but there are too many of us to dismiss our feelings entirely.

I’d like to think our suffering really is legitimate. Life can be very lonely, especially if your disability is particularly rare. That feeling of isolated desolation is emotionally crippling.

We are bombarded by unwanted opinions. Stop taking those medications and deal with your problems. Use the power of positive thinking. The only disability is a bad attitude. Suck it up, buttercup; it can always be worse. Be grateful that you have as much as you do. What you have is more than many can enjoy, so keep your chin up.

This is so much more than a hashtag

You may well ask what we could accomplish with all this public, viral venting. Besides the undeniably cathartic benefits, there are more concrete, long-term goals we can achieve if we reach enough able-bodied people. Much of the “ableist script” can be altered or eliminated. We can clear up misconceptions and debunk myths. We can explain why certain ideas are genuinely harmful. We can foster empathy. We can educate. The internet does a lot of harm, but in this case, it’s a remarkably useful tool. Viral attention can be an asset, and I think we need to pounce on this opportunity.

Some are already feeling hopeful, which is a very welcome sign.

We need more than an echo chamber. We must do more than blow off steam. We should strive to advocate for ourselves, but we should not do so at the expense of clarity. We can’t allow our anger to distort our messages or alienate the very people we are trying to persuade. We are capable of intersectional solidarity, and we can put it to good use. Don’t dismiss this purely because it’s a hashtag. In this case at least, it has enormous potential. We mustn’t waste it.

Don’t Be Fooled: Love Hasn’t Won…Yet

On June 26, 2015, the US Supreme Court ruled that same-sex couples now have the right to marry in all US states. Many took to Facebook, Twitter, and other social networks to celebrate that the US had finally achieved marriage equality. Not everyone was ready to celebrate just yet, though. Alicia, who is blind, is intimately acquainted with the marriage inequality plaguing less visible minorities in the United States. While everyone is rejoicing that love has won, Alicia finds herself unable to keep quiet. While she and her fiancé (also blind) do not receive the hatred and scorn that same-sex couples do, they still suffer discrimination which, while much quieter, is just as meaningful. According to Alicia, we have a long way to go before #LoveWins. This is her story, so I’ll let her tell it.


When Meagan asked me to guest-post on her blog, I was honored. This issue is near and dear to my heart, but I hope to write out my thoughts without turning this post into a rant.
While my friends on social media were celebrating, I found myself furious. Marriage equality is not yet a reality. I know this because I cannot marry the man I love … and I don’t foresee a day when that will change.
The United States has marriage penalty laws that will affect anyone who is receiving government benefits. These include SSI (Supplemental Security Income), SSDAC (Social Security Disabled Adult Child), and, perhaps most importantly, Medicaid. These programs are income-based and, once a couple marries, that income is considered “joint”. Therefore, if you and/or your partner are receiving any of these benefits, marriage may put you over the ridiculously low income limit. This assumes that married couples have a higher joint income than they would if they were single but, as is the case with many disabled couples, this is far from guaranteed. Even with joint income, most of these couples are still unable to cover needs such as shelter, food, and medical care (especially the latter) without assistance. Given that a very high percentage of people living with disabilities is unable to work, these penalty laws prevent many disabled couples from getting married, despite their commitment to and desire for marriage. Social Security is sneaky about this. Program criteria states that if a couple is “holding out to the community as married”, that couple can be considered married for Social Security purposes, and lose their benefits. Unsuspecting couples–who accidentally find themselves within Social Security’s criteria for “holding out”—could lose their benefits, leaving them with very little recourse, if any.
My fiancé (Mark) and I both receive Social Security benefits and health coverage through Medicaid. If we were legally married, our cash benefits would be cut dramatically if not entirely, and we would both certainly lose our medical coverage. I have several physical health issues that would make my situation precarious. Even worse, my partner has cancer requiring aggressive expensive treatment. There is no way we could afford this if he lost his medical coverage, which forces us to choose between marriage and his cancer treatments.
I hasten to point out that these laws do not only affect people with disabilities. They unfairly penalize the elderly (often low-income) who are only able to cover their increasing health needs with programs like Medicaid. A friend told me a story about her Grandmother, who had lost her first husband. A year later, this elderly woman met a man she wished to marry. Marriage wasn’t an option, however, because they would both have lost their medical and Social Security Benefits. The choice: stay unmarried, or forfeit the funds that would cover essential medical and living expenses. The solution, whether for a young disabled couple, or an elderly couple with no disability at all, is to cohabitate, and make it abundantly clear to everyone that they are either roommates living together for economic reasons, or nothing more than boyfriend and girlfriend. I, like many others, cringe at having to refer to someone I love more than my own life with the same term a high school couple dating for a week would use for one another, but it is what we must do to secure our living and medical expenses.
When I first started discussing this issue on social media several months ago, I was surprised by the reactions I got, particularly from those within the disabled community. Many asked me why I was so upset: after all, Mark and I were married in our own hearts. Why did we need a silly little piece of paper? Weren’t our own feelings toward each other good enough? The answer is no. The even more infuriating thing is that many of the people giving us these platitudes were the same ones that were telling LGBT couples to keep fighting the good fight, and not give up until they were granted equal rights. No one told these couples that “it’s just a piece of paper.” So, why does this attitude change for couples like Mark and Me?
In the early days of the fight for gay marriage, the concept of Civil Unions was created, which gave same-sex couples the right to be at a partner’s bedside, privy to their medical information, and other rights of marriage without making it legal. For the most part, the LGBT community refused to accept this. For many that I talked with about this issue, it was the system’s attempt to placate them: “we’ll give you half of what you want, but not your heart’s deep desire.” Given that, even when civil unions were offered, same-sex couples continued fighting for the fundamental right that is legal marriage, and were encouraged to do so. Yet there is not even an option for civil unions for those receiving benefits like SSI, sSDAC, and Medicaid. In fact, we can lose these benefits by simply appearing to be married—no piece of paper necessary. Not only do we not get our heart’s desire, but we must go to the other extreme and make sure we don’t join our lives in any way beyond that of roommates.
People (some of them disabled), have come up with another argument concerning why they think I am wrong about this country still not having marriage equality for all. Their take is that prior to the Supreme Court ruling, a same sex couple simply could not get married, no matter how much they wanted to. It was just not an option. They argue that couples such as Mark and I could go down to the courthouse today, apply for a marriage license, and get married by a Justice of the Peace in record time. These people claim I have no argument, because Mark and I are simply choosing not to marry, rather than being unable to. on the surface that logic would make sense. But what happens to us after that marriage ceremony in the courthouse? Do we go off on a honeymoon and begin our lives as happily married people? No. Letters would begin arriving in the mail, announcing that the Social Security benefits which provide for our basic necessities for daily living have been reduced or cut off altogether. Next we get letters that announce that coverage for Mark’s life-saving cancer treatment has been taken away. What do we do then? We are not the only ones in this situation, and many people who wish to marry face disabilities and health difficulties even more severe than ours. Marriage or cancer treatments…not a real choice. For Couples where one or both partners is even more seriously disabled, this is not a choice, either. Marriage, or life-sustaining medical equipment, skilled in-home care, medical procedures….not a real choice. Marriage or food on your table, shelter over your head…this does not sound like a real choice to me.
My friend Amy likened this issue to the poll tax laws that many states had from the late 1800’s all the way up to 1966. Strictly speaking, blacks, whites, women, and Native Americans all had the right to vote….so long as they paid the required poll tax, and (in some states), passed a required literacy exam that showed they were educated. The makers of these laws knew full well that on the surface they would look like progress. Proponents of the poll taxes and literacy tests claimed the laws were perfectly equitable: after all, everyone did have the right to vote, and everyone wishing to exercise their right was required to pay these taxes, regardless of race or gender. What the lawmakers would not publicly admit was that there were groups who would be disproportionately unable to pay, such as African-Americans, Native Americans, women, and even impoverished white people. The sums of money those states required are literally pocket change to us in 2015, but they were exorbitant amounts of money at that time.
The reality was that the poll taxes and literacy tests were quiet ways to ensure that only select groups would be unable to vote. It could have been said to anyone at that time, “Oh you could go vote, you’re just choosing not to.” Technically, this would have been correct. Yes, a person in a minority group could have gone to their local courthouse and cast their ballot, but were faced with a choice that was not really a choice: use the money they often earned with back-breaking labor to exercise their right to vote, or feed and shelter themselves and their families.
Fast forward to modern day and the Federal marriage penalty laws. There are no laws on the books that explicitly state that people with disabilities or those who are elderly cannot marry. There are no rules that explicitly state that those receiving Social Security and/or Medicaid benefits are not allowed to get married. There would probably be a public backlash if the laws were this blatant. Like the historical poll tax, it is a very insidious form of discrimination that most people are unaware of. Many advocates who are aware view it as a quiet form of ableism and ageism.
They theorize that lawmakers are aware that people receiving benefits from these programs largely fall into the disabled or elderly categories. In the minds of many young and/or able-bodied people, these groups should not be allowed to marry anyway. The theory is that Federal laws penalizing recipients of these programs for marrying are just an easy way to ensure that this does not happen, while not being outwardly discriminatory. While I have yet to make up my mind whether I entirely agree with this, it would not surprise me to find it was the case. Therefore, it baffles and angers me that people continue to claim the US has achieved marriage equality for all, just as it would baffle and anger me if someone claimed the poll tax set-up was voting equality for all.
When Mark and I mention our plight to friends, family, medical professionals, etc. Our pain is minimized, more often than not. We get statements like, “Oh, you don’t really need marriage, you know how you feel about each other.” “It’s a silly paper that doesn’t mean much.” Really? I beg to differ. The gay rights movement didn’t see it this way, and though their fight was long, drawn-out, and in many cases painful, they eventually achieved enough lobbying power to get the laws changed. I can’t help but wonder: where is our lobbying power? Where are the groups that will rise up, go to our Congress people, and try to create awareness and change for the millions of couples who are disabled or elderly? Where are the Hollywood celebrities? The musicians with world-wide fame? The high-profile athletes? Where are all the people who helped fight for same-sex marriage? What no one has appeared to consider is that the Supreme Court decision now bring same-sex couples who receive these benefits under the same discriminatory rules. While awareness of this issue is growing, I’m not sure that the disabled and the elderly communities have enough numbers to push such change forward. Collective action is often most effective, but groups/organizations who recognize this problem and its seriousness are few and far between. Those that do exist are often very small groups without the ability to attract the high-profile audience that is needed to get the attention of those in power.
I’ve known of these laws for years, and they have always disgusted me. Unfortunately I never thought to help advocate for change, because I never envisioned meeting anyone I would want to marry. Now I have, so these laws have become very personal. I wish now that I had fought to advocate for change before this issue became so personal to me, but like so many of us, I failed to act until an issue touched my life directly. However, now that it has, I will continue to work to create an awareness of this discrimination, and do whatever is in my power to see the laws changed. I hope this post will be a step in that direction.

The Word Is Blind

“So, you’re blind—I’m sorry! I mean…visually impaired—I mean…uh…I’m not sure of the…terminology…”

I’ve been called a lot of things in my life (and, yes, most of them were nice). Many of the labels people have placed on me because of my eyes are diplomatic but straightforward: visually impaired, low-vision, visually handicapped, physically handicapped, disabled, etc. These are all accurate, so I have no objection to them (though low-vision perpetuates the misconception that I see far better than I actually can). Of course, I’ve also been called—and heard others being called—more “politically sensitive” terms: differently abled (really?), differently seeing (uh, no…), special (gag me with a spoon, please), and handicapable (I wish I was kidding).

We are currently surrounded by an environment that demands political correctness and unbiased language. Normally, I’m one of the most enthusiastic supporters of bias-free language, because I understand the power of the words we use. Even when we aren’t conscious of it, the words we choose to use carry plenty of potential impact. Language really does matter. In that light, I understand and support society’s efforts to attach meaningful, accurate labels to minorities, particularly labels free of derogatory associations. If I were conducting a business meeting and someone referred to me as a “blink”, I’d be rather offended: that’s not how you treat someone, especially in a professional setting, unless you know them well and have an intimate knowledge of their personal preferences. I would no more call a disabled stranger by a derogatory name—lighthearted as I may feel at the time—than I’d call my lesbian best friend a dyke. Personally, I don’t consider it a polite (or even wise) endeavor, no matter how good my intentions are.

But, as always, there’s another side to this coin. There is such a thing as tiptoeing to such a degree as to invite ridicule, and it is my opinion that some of the terms listed above are just begging to be mocked. I mean, come on—“handicapable”? That sounds like a bad joke, not a “politically sensitive” label to use in official settings. It sounds, in fact, like someone’s terrible idea of a catchy hashtag. Please, leave that condescending nonsense on Twitter where it belongs. Other terms, while being less deserving of derision, commit the grave sin of being totally inaccurate and misleading. Take “differently seeing”, for example: I don’t “see” differently than other human beings. True, I tend to use my other senses more often than sighted people, but as I’ve previously explained, those senses are exactly the same as yours. They’re not heightened or supercharged in any way; I simply know how to use them, and have little choice but to rely on them. Seeing differently would necessitate extra organs (or perhaps extra brain function) and I can assure you that I definitely don’t have any mutated eyes or visual cortices lurking around. I’d tell you if I did—imagine the money I could make from the media buzz alone! (And, no, I am not giving you permission to come and investigate for yourself.) It’s also worth mentioning that I despise platitudes like “you can see with your heart”. I understand the kindness behind such pronouncements, I really do, but we all know it’s gooey, sentimental rhetoric, right?

In general, I believe in calling a spade a spade. Dancing around the simple facts with labels meant to encourage respect and sensitivity does more to annoy me than set me at ease. It’s impossible to keep up with the terminology that is en vogue on any given week. For the longest time, it was my impression that “visually impaired” was considered the acceptable term for official documents and workplace discourse, as determined by the CNIB. When I was working for them a couple of years ago, however, I quickly discovered that I was doing it wrong: the new term was “partially sighted”. Visually impaired, it seemed, was sooo last year. Who knew? I certainly didn’t…

I’m not sure what it is about blindness in particular that makes people so timid, but I’d love to relieve them all of that heavy burden. It’s okay to admit that someone is disabled—yes, disabled, not “differently abled”. Some people have stuff wrong with them, and that’s not a horrible thing. It’s not a sin to openly admit that someone else isn’t a perfect specimen of efficiency. Flaws don’t have to be scary, and disability doesn’t have to be taboo. Set aside your worries about sensitivity and correctness for a moment, and listen: my eyes don’t work. I cannot see. Therefore, the logical conclusion is that I am blind. Not “differently abled”, or “differently seeing”…just “blind”. If you want to get really technical, you can use “visually impaired” for people who have enough vision to read large print and use screen magnification. Otherwise, “blind” is perfectly acceptable, at least to me and the majority of blind people I know. If “blind” scares you, go with “visually impaired”; you’re very unlikely to upset anyone that way. I have met a very few people who were especially sensitive about semantics, but even they were all just fine with “visually impaired”.

It really irks me when people treat “blind” like a curse word—as though the last thing anyone would ever want to admit to being is blind. Believe it or not, I’m rather okay with the fact that my eyes don’t work, and thus I am okay with being called blind. It’s what I am. I’m no more uncomfortable with being referred to as “blind” than I am with being referred to as “female”, or “brunette”, or “human”. These are all natural parts of my being and while I’m not necessarily proud of my disability, I’m at peace with the fact that it exists and that there’s a word for it. So, rather than wasting your valuable time stumbling over the “correct” terminology, just call me “blind”, because that’s what I am. It’s not insulting, or insensitive, or ablest; it’s honest.

Of course, my favourite thing to be called is “Meagan”. I have a name, so please use it. If you know my name, there is no reason whatsoever to refer to me as “the blind girl”, or “the disabled girl”, or anything similar. Names are given for a reason; please do me the courtesy of using mine. After all, more than “blind”, I self-identify as “human”, just like you.

Author’s note: If you are reading this from somewhere other than Earth and do not, therefore, self-identify as human, please forgive the generalization. I wouldn’t want to use improper labeling!