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 I grew up in the shadow of pity, outdated ideas, and low expectations.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.
That’s pretty scary stuff. I knew people had an aversion to doing without sight but I didn’t know it was so crazily irrational.
I, myself, feel privileged to have been born blind and developed mental health issues in early adulthood because of the knowledge and experiences both have given, and still are giving me. Any frustration over inaccessibility of information, public attitude or other barriers is about society’s response to my impairments, not the impairments themselves. I think it’s vitally important to make that differentiation.
We need to stop thinking of impairment as ‘undesirable’; that’s the only way we’re going to get wider society to follow suit. After all, I don’t know anyone who is Maori who feels that being Maori is undesirable, though they may — justifiably — believe that their treatment by society often is.
People will always be born different, develop illnesses or have accidents; it’s part of life. The best thing we can do as our lives change is decide how we’re going to deal with that change, not wish it hadn’t happened. Our brains and bodies may have evolved to react in certain ways but we human beings have the unique ability to make conscious choices which over-ride these primitive impulses.
So let’s stop thinking of ourselves as unlucky, or broken, or lesser in any way; we’re simply different, and it’s diversity which makes the world turn. Then we might just convince our sighted brothers and sisters.
Hi, Kylee. Thank you for reading, as always! I can’t say I have quite as rosy a view of disability as you seem to have. When I’m dealing with crippling pain from migraines, depression resulting from my mental illness, or unnecessary barriers related to blindness, I’m feeling anything but privileged and/or grateful. Still, I do appreciate the efforts of those who are attempting to bring universal design and the social model into the foreground, and I do think that unless disability is seen as neutral rather than inherently horrific, we won’t make much real progress.
Love this brilliantly written piece. Been blind myself since I was 5 and agree with a lot of what you’re saying!
Is the medical community and so many of these sighted people really this clueless?
I could write paragraphs on how amazing it is to be blind in the 21st century, in part thanks to the incredible technology we have. But I won’t, because people will believe what they want to believe whether we like it or not.
Sorry, all of us are not in tune with this. It was not necessary for me to loose my sight 13 years ago as a middle age man loosing almost everything but life itself.
Yet you did, and you survived it. Congratulations!
Hi I think the way you write this is great and society certainly do need to accept diversity. Unfortunately I don’t see my blindness in quite the same way as things where different when I was a child in the 60’s. Keep the positivity going and good luck for your future.
I’m a ‘sightie’ who has always feared blindness (no particular reason, I just couldn’t imagine not being able to see). Six years ago I met my now BFF, who is black blind in one eye and has a tiny bit of sight in the other. Since meeting her I am so much less fearful – I can see just how ‘normal’ (sorry, hate that word!) her life is, she works, gets around on trains/buses etc, does pretty much everything I can do (I can whistle though, she can’t LOL) and has the most gorgeous guide dog.
I guess what I’m trying to say is that I think the fear comes from not understanding blindness properly. I’m sure there are many blind people who struggle, but I’m sure there’s an equal number who, like yourself and my friend, just get on with doing everything albeit perhaps slightly differently and undoubtedly with the odd frustration sometimes. Education through articles such as yours are a great help though and I think the medical profession too could benefit from knowing it’s better to be blind than dead! All the best to you.
I agree–it stems from genuine ignorance most of the time, coupled with concern for people’s quality of life. Nothing inherently wrong with that, as long as people are willing to be educated, but the medical community needs to be held to a higher standard than the average person on the street. Thanks for sharing your personal story; I have no doubt your blind friend is proud to know you!
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