It is 2010, and I am standing in front of a classroom of thirty college students at Carroll University where I am a student myself. But I am not in this class. My classes are in the communication and english departments. This is a class for business majors studying diversity in the workplace, and I have been invited as a guest speaker. Presentations like this are second nature to me. I have been giving presentations like this since I was in second grade and was invited to speak to a third grade class. When you have such a rare disability, you are an ambassador whether you want to be or not, but I do genuinely enjoy giving these presentations.
In front of me, the professor has graciously placed a big table where I set up as the class chats amongst themselves and gets situated. I have brought along my BrailleNote, the Perkins Brailler which I used for math, the one subject that is not as feasible on the BrailleNote where you can only see one line at a time, some braille promotion cards I bought from the National Federation of the Blind that have the alphabet in print and braille, a grocery bag with boxes of cereal, milk and utensils–later in the class, students will put on blindfolds and attempt to make themselves a bowl of cereal–and of course, Gilbert who lies snoring at my feet.
I introduce myself and give a brief history of how I became blind, and how I adapted, at school and at home. Then for the next hour or so, I open up the floor for questions. Most of the time is spent on the garden variety questions like how I accomplish various tasks, whether I enjoy watching television. But without fail, the big question always comes, usually toward the end like a grand finale: “if advancements in science allowed you to see again one day, would you want to?”
I am not offended by the question. It is a valid question I am sure I would have asked if our roles were reversed, and something I have wondered about when listening to people with other disabilities I cannot imagine living with, such as people confined to a wheelchair. The problem is, this question always leads to internal conflict for me. These presentations are not job interviews, but indirectly, they are. After graduation, many of these student will go on to careers in business, possibly conducting job interviews themselves. If they see that a candidate for a job is visually impaired, their interaction with me will almost certainly come back to mind, and with it, the attitude I conveyed toward living with blindness. There is an unwritten rule in the disability community that to wish for your disability to be healed is unseemly, a sign of low self-esteem. So the same advice experts give for job interviews applies. Be honest, but accentuate the positives. Project confidence. So I respond with a half-truth, that it would be neat to experience what it would be like to see for maybe ten minutes, like if there were goggles I could put on like the ones used for drunk driving simulations in high school. But really, being blind is normal for me as I was too young to remember when I had sight, so having sight restored someday isn’t something I think about a lot. But the full, unvarnished truth is way too complicated to sum up in a job interview or class presentation.
It is a Sunday morning when I am five or six years old. I am standing with my family at Saint Dominic’s Catholic church listening to Father Kurt read from the Gospel of John. Like most children that age, I was fidgety and often tuned out the church service, just wanting to get home. But that day’s reading piqued my interest. It was the story of Jesus encountering a man blind from birth, begging by the side of the road. Jesus puts mud on the man’s eyes, telling him to go wash in the Pool of Siloam, at which point his sight would be restored. Mom must have sensed what my little mind was thinking as an excited smile spread on my face. Usually preferring that us kids hold our questions until we are in the car, Mom leans over to me on the spot and explains to me in a whisper how this story was actually a metaphor for spiritual blindness. Now that I am an adult, I believe her explanation was also a half-truth. Jesus absolutely does use this healing to expose the spiritual blindness, the hardness of heart exhibited by the Pharisees. But Jesus did literally restore sight to the blind. I respect Mom’s intentions. She didn’t want me to become disheartened toward Jesus, or develop bitterness toward my literal blindness when in my innocence, I prayed for Jesus to restore my sight and nothing happened.
So in the years that followed, I rarely thought about whether I would wish to see one day, and when I did, it was more in terms of mere curiosity than a real longing to see. I think the word normal is such a funny word. It is defined as “conforming to an expected standard,” but everyone’s life is unique in some way. Normal means something different to everyone. My peers, who could see making them “normal” by society’s definition would be fascinated by how I could read and write braille. To me, braille is normal, but I would find myself fascinated by the tiny wrinkles made by the pens of my peers on the pages of their spiral notebooks. If we were sharing a desk for a group project or something, I sometimes couldn’t help reaching over and sliding my fingers along those lines of tiny wrinkles wondering how they can read and write a language that looks so complicated. Not understanding my fascination because print is normal for them, they would often move their notebook saying, “sorry my notebook was in your way.”
Another mantra emphasized by the disability community is to not let the disability define you, and to an extent, I agree. No one with any kind of disability should let people tell them they cannot do something, cannot pursue a dream because of their disability. More than at any other time in history, technological innovations have opened so many doors for people with disabilities. But I have often wondered if in some ways, I would be a different person if I could see. I often think about how interesting it would be if I could clone myself, and then be a fly on the wall and watch her grow up, just to find out to what extent my personality is influenced by my blindness. Would she enjoy watching and participating in sports, or would she, like me find the cacophony of screaming fans, whistles and buzzers obnoxious, even if she could see what was going on with the game? Would she still find museums boring even if she could see what was behind the glass? Would she enjoy helping Mom select a paint color and be excited about how clean and cheery the newly painted room looks, or would she, like me, groan when Mom wanted to re-paint a room because all she would notice is the stinky paint fumes, and the annoyance of having to move about carefully for a few days so as not to accidentally touch the wet paint, or stub her toe or bang her shin on the furniture that had to be re-arranged for the project?
When I was in middle school, a close friend who had to endure bullying confided in me that she loved having me for a friend because I didn’t cast judgment about her physical appearance. This warmed my heart, and most likely, I wouldn’t have said anything mean to her if I could see as kindness toward others was engrained in my siblings and me. But would my clone, whose personality would be identical to mine except for her ability to see, reveal that my heart wasn’t really as pure as my blindness allowed it to be?
With no concept of physical appearance, I never rebelled, trusting my parents to choose respectable clothing for me, and accepting their guidance when they taught me how to comb my hair. But would my clone have chosen to rebel, wearing short skirts, dreadlocks, maybe even a nose piercing or tattoo?
But all these questions really aren’t important in the grand scheme of life, just curiosities to daydream about. Blindness is normal for me, and I live a fulfilled life.
In 2015 while taking a walk with my dad one summer evening, I met Eda, a neighbor who was one of Jehovah’s Witnesses, and out of genuine curiosity dating back to childhood when Jehovah’s Witnesses would knock on our door, I said yes when she asked if I would be interested in a weekly bible study. I didn’t become a Jehovah’s Witness, as much of their theology I disagreed with. But studying with them deepened my own faith in incredible ways, and one belief that both of our faiths share, although mainstream Christianity does not emphasize as much, is that Christ will return and all disabilities will be healed. Given my lifelong indoctrination with positive attitudes toward my disability, I was conflicted at first as to how I should feel when Eda talked so passionately about this. Part of me wanted to reprimand Eda for implying that my disability was a problem that would be cured one day, when I was living a happy fulfilled life. And yet, that excitement at the prospect of sight being restored from when I heard that story from the Gospel of John, returned, this time multiplied exponentially as it dawned on me this story was more than just a metaphor. In spite of myself, I found myself verbalizing to Eda and her friend Jane, daydreams of running with both hands swinging at my side, no longer needing to hold on to a white cane, guide dog or sighted person to guide me, daydreams of exciting solo excursions to wherever the spirit led me, again no longer needing the assistance of a sighted person. Was my self-esteem lower than I thought? What would other people with disabilities think if I confided in them the freedom I imagined experiencing if my disability could be healed?
A few months later in a training meeting at the Social Security disability firm where I was a paralegal, an attorney was explaining that if there is strong medical evidence that a person’s disability could be cured, but the person chooses not to get the necessary treatment, they could be denied disability. On one level, this makes sense. But it also made me wonder, if a cure for my disability were discovered, would I have a choice whether to receive it? On the surface, of course it would be my choice. No one can handcuff me and drag me to the hospital for the stem cell infusion or chip implant that could restore my sight. I can empathize with the perspective that taxpayers should not have to pay welfare to someone whose disability could be cured. I am a bit of a prideful person who for several years didn’t even want to apply for disability since I am college educated and capable of working. Since there is no cure for my blindness right now, I was able to find an employer willing to accommodate me, assigning the visual aspects of the job to others. But business people are always talking about efficiency. Would any employer still accommodate me if I chose not to be cured? Thus, practically speaking, I may not have much choice. With my disability benefits cut off, and business no longer interested in making accommodations, choosing not to take the cure would mean choosing poverty. Recognizing this risk, I think I would still choose not to take the cure. I never rebelled when it came to dress and hairstyle, but I love the idea of rebelling when it matters. I want to live in a society where people are accepted as they are, where diversity is cherished. I have nothing against people who see things differently, especially those whose disability began later in life when it wouldn’t have formed a core part of their identity, shaped their personality. But I wouldn’t want to send a message to young people whose disabilities cannot yet be cured that, “for now you can hold your head high, enjoy the opportunity you have to be an ambassador, but if a cure is found, you are going to have to cave to the pressure of taxpayers and businesses, conform to society’s standard for normal in the name of financial security.”
In addition to financial concerns, I hesitate to have my disability cured in this life because in regaining my sight, my life would lose some of its richness. Don’t get me wrong. Not every day of life as a blind person is sunny. In fact, life as a blind person can sometimes be a real pain in the ass. It took me hours longer to complete math homework than my peers, especially when the assignments involved graphs or geometric figures. When I flirted with the idea of law school in 2013, I couldn’t believe the hours of paperwork I had to fill out proving I was blind to get the LSAT in braille. Would a sighted person really request the LSAT in braille just for the heck of it? And despite growing up with parents and teachers who had me chanting “yes I can!” long before Barack Obama, it is hard not to have a crisis of confidence when you are looking for employment, and every company’s website has that canned statement that they don’t discriminate on the basis of disability, and yet all their job postings have at least one essential duty that is visual in nature, like taking photos, or overseeing layout and design.
But I cherish the many wonderful moments my disability has brought about. These include hillarious misconceptions which sighted people take for granted, like how until middle school, I thought that airplanes flew by flapping their wings like birds, as well as commical moments of irony like the time I got a letter pre-approving me for an auto loan. Blind people do not have supersonic hearing, but the brains of people who are blind compensate by being more attuned to the other senses, so I have been known to hear or smell things that others miss. Being blind also has a few perks, like being able to read when it is pitch dark, and being able to have a guide dog who has been an unofficial therapy dog as well, keeping me smiling when life got tough. But most importantly, I have enjoyed the opportunities I have had to enlighten people by showing them there is more than one way to complete tasks like reading, writing and traveling.
In the story of the blind man from the gospel of John, the apostles ask Jesus if this man is blind due to sin by him or his parents, to which Jesus responds in John 9:3 that neither him nor his parents have sinned. His blindness happened so that God’s work could be displayed in his life. For this blind man, God’s work was displayed through healing him so that he could expose the spiritual blindness of the pharisees. For my life, I believe God has a purpose in me remaining blind to show what a rich, fulfilling life is possible even when you cannot meet society’s standard of normal, to be a friend to those that everyone else puts down because of physical appearance. And yet as it says in Ecclesiastes, to everything there is a season, so in those moments when being blind can be a real pain in the ass, I love to daydream of a day when I might be able to run with both arms swinging at my side.