My Heart Is Not Blind: On Blindness and Perception

By Michael Nye

My Heart Is Not Blind: On Blindness and Perception is a collection of stunning portraits of blind and visually impaired people taken by photographer Michael Nye. Each image is accompanied by an intimate story told by the subject concerning his or her experiences and unique perspective.

The causes of vision loss range from genetic predispositions (retinitis pigmentosa) or disease (glaucoma) to external circumstances such as accidents (struck by a train) or violence (gunshot wound). The people in this diverse group differ not only in their particular conditions and losses but also in their cultural and socio-economic backgrounds. Taken as a whole, however, the accounts of adapting to changing modes of perception are bound by a common theme of resilience, revealed in shared reactions and unexpected insights.

The subjects depicted in My Heart Is Not Blind share their experiences and unique perspectives in a personal narratives that accompany their respective portraits. Most speak of the transition from sight to vision loss, and how that has changed—and not changed—their ability to perceive the surrounding world. Some question the classification of blindness as a disability. One participant proposes that blindness may, in some ways, even aid in perception, musing, “if you can always see the sun, you can never discover the stars.”

My Heart Is Not Blind offers a window into the world of the blind and visually impaired, revealing surprising similarities and fascinating differences alongside compelling accounts of survival, adaptation, and heightened understanding. The collection invites us to reconsider what we think we know about blindness in order to gain a deeper understanding of vision and perception.

• Language: English
• Publisher: Trinity University Press
• Release date: Mar 19, 2019
• ISBN: 9781595348753

Michael Nye

Michael Nye is the author of the story collection Strategies Against Extinction and All the Castles Burned. He was born and raised in Cincinnati, Ohio, and attended Ohio State University, where he graduated with a BA in English Literature, and the University of Missouri-St. Louis, where he earned his MFA in creative writing. His fiction and nonfiction have appeared in American Literary Review, Boulevard, Cincinnati Review, Crab Orchard Review, Epoch, Kenyon Review, New South, Normal School, Sou’wester, and South Dakota Review, among many others. His work has been a finalist for the Katherine Anne Porter Prize in fiction and nominated for the Pushcart Prize. He and his wife live in Washington, D.C.

Book preview

DEAN GEORGIEV

My name is Dean. I live in Mililani, Hawaii. It’s a good-sized little town in the center of the island of Oahu. I live with my wife and we have two grown children. I work for the Department of Vocational Rehabilitation in the blindness services branch called Ho’opono. In Hawaiian it means to make things right.

As a child I was night blind, so during the day was when everything happened. I remember light and brightness. I enjoyed the sunshine and the outdoors. I could imagine bright Sunday mornings and going into the woods behind our house to play with friends. My ability to progress with blindness began very young with a curiosity and a rebellious sort of questioning attitude. I’d ask questions like, Where does this path go? I would follow it to explore. I didn’t know it at the time, but it was part of the way I learned. I always wanted to know why.

I was born with retinitis pigmentosa. The doctors told my parents that I would lose my vision eventually. They couldn’t be precise about when that would happen. For the first ten years and most of my teens, I had day vision. I don’t think I’ve ever cried out of sadness as far as being blind. I have maybe cried out of frustration, and a failure at not being able to do something. What I’ve learned about frustration is that it’s just something that you experience on the way to success. That’s the way I look at it now. It’s the same if you’re doing a jigsaw puzzle. Sometimes it doesn’t come to you right away. You have to work at it, and then eventually all the pieces fit together.

If someone asked me to describe myself, the last thing I would say is blind. The first things I would say are American and father. Later, another was the identity of teacher. When I’m able to touch people’s lives in a positive way and effect change that will help them as blind individuals move forward successfully, that is a great thing. One of the biggest confusing things about identity is the blindness part. It changes things. Sometimes it makes you seem limited in the eyes of others. It changes people’s perception about you. Someone would say, You’re really good at something for a blind person. I believe that it’s important to know another person on a one-to-one basis. When they get to know your name, what you’re like, what you believe in, what you do, blindness becomes less important to them. They might even come to the point where they say, Wow, I forget that you’re blind. Good that you forget that I’m blind.

As I lost my vision, sound has become primary. I switched over to auditory learning. It wasn’t an easy process but I was able to recognize the anatomy of sound. My hearing is normal. It has tested normal and it’s still normal. Beyond that, what has really changed is, now, I’m able to distinguish what I hear. I had to make adjustments and notice many things about the sounds I hear. If I tap on something, depending on movement and direction, depending on the air, depending on the acoustics in the room, that same tap is going to sound different. That subtlety of sound is very important. I am confident of my ability to find my way around. I can hear a building beside me when I walk. It’s because the sound is flowing around it. I can walk down a street and even catch the sound of a pole that gets between me and the sound on the other side. I can originate sounds by tapping my cane or listen to external sounds.

The whole world is a tapestry. If you were to think of a bunch of colors, that’s how different sounds are coming from all the directions. You could have the same exact sound, but because of what it’s around or where it’s coming from, you’ll be able to give it meaning.

Beauty to me is something that you are attracted to, something that you want to give time to savor and experience. Particularly here in Hawaii, the trade winds kiss your skin. The wind leaves you with a sort of a tranquil feeling under a shade tree. You don’t have to see what’s around you. Baseball is something I love. I love it in its symmetry, in its rules. I love it in its tradition. There are just moments in a baseball game that can be so dramatic. It’s a sport that is quiet one moment, kind of a lazy pace to the game, that suddenly erupts in a burst of excitement. You can feel the energy when you hear a crack of a bat or a ball hitting a glove. And then there’s the food that you smell. There are people around you who are having conversations, and it’s a totally nonvisual experience that is so rich.

Like sound, touch is a very important sensory system. A lot of people think that touch is part of the hand and the fingertips. It’s true, but it’s a lot more. It’s your skin sensing light, or the sun on your face. You’re able to feel things thermally. Touch is also a sense of space. What space are you in? You can identify through sounds whether you’re in a big auditorium or a small room. But being spatially aware is knowing where you are relative to another person and being able to move through space.

Blind people need to expand their reach. They need to stretch out their arms. The cane is a very important part and extension of the tactile senses. When people started to see me with my cane—that cane belonged to me and I used it proudly. A lot of people want to hide the fact that they’re blind. They might use a folding cane and put it away. That is a mistake. Blindness means you do things differently. But it doesn’t mean that because of blindness, you need to be treated differently.

I am the director of the New Visions Program in Honolulu. We change what it means to be blind. Blindness is not a barrier to success. Some people who lose their vision shut themselves down. It’s almost self-fulfilling, because they are not doing anything. Some who’ve been blind all their lives can be socially backward. They haven’t been exposed, because they’ve had parents or teachers who took control of their lives and said, I need to watch you because I don’t want you to get hurt. That person has not been allowed to grow and evolve.

A person coming to our program is not sitting around talking about their problems. What we’re saying is, Yes, we understand. Okay, now let’s go to work. We have students stay with us for nine to twelve months and learn to adjust to their blindness and grow in their confidence and skills. Through the Socratic method, we teach critical thinking and problem-solving abilities. Questions are the programming of your mind. If you ask, Why am I blind? well, you’re not going to get a very good answer. But if you ask, How can I live a positive, happy life as a blind person? those answers will be a lot more rewarding. We’re passionate. Our whole crew is passionate about our program and about teaching a newfound perspective, confidence, and skills to our students.

Many sighted people think blindness means the world is over. No, it’s not over! You haven’t lived with it. You haven’t discovered it. You haven’t played with it.

When I got to the point where I lost my remaining usable vision, I just let it go. I couldn’t do it anymore. I let go and it was freeing. I felt so unburdened, because now I could focus on my strengths. I could focus on nonvisual learning. And what happened is that the world opened up.

So think of this analogy—that the sun represents vision and then all of a sudden it’s gone. Well, what is there? There’s not nothing. There’s a whole universe of stars that reveal themselves to you. If the sun was out all the time, you would never know the stars existed, at least not visually. That’s what people don’t know about blindness, that when you take away vision, you’re not taking away everything. No, you’re not! You’re basically uncovering and allowing other things to be revealed to you.

CHELSEA MUÑOZ

I like to learn more about everything. The more I know about life and humanity, the more options I have. I used to enjoy going to the butterfly gardens when I was six years old. My elementary school teacher would take us. They encouraged us to listen to the sounds and talk about how the air felt, and how we felt being around ponds and nature as a whole. I remember that they said the female peacock was really ugly. I questioned it actually. I asked them if they could describe ugly more clearly, because I didn’t understand what it meant. They couldn’t explain what it meant.

I used to be able to see out of both eyes. It was never very reliable. People would hold something blue up to my face and ask, What color is this? Deep down I knew that I couldn’t tell them accurately. I just guessed. Sometimes I was right, sometimes I was wrong. When I was younger I could see the moon. Not wishing my blindness away, it would be really cool to see the moon again, or the sun. I was able to thoroughly see the shapes of things. I could never see somebody’s face or any details. I haven’t seen birds or any kinds of animals. A couple of years ago I woke up one morning and had nothing but light perception. I could no longer see the outlines of people. I don’t see anything right now.

Initially when I lost my sight, I was scared. But very quickly I became relieved, because I didn’t have to lie to myself that my vision is going to improve. Being totally blind has made my life much easier in more ways than I can ever express. I don’t have any vision to distract me. I’m not straining or trying to focus, and I’m free to use alternative techniques of touch, taste, and smell a lot more. I’m not bound by this notion that if I go blind my life’s going to suck—because that’s just not true.

As a young girl, I always knew I was different. Even as a child I kept thinking, Why does being different have to be a bad thing? My mother and her relatives would tell me that I was a burden, because I couldn’t see. I also have this additional disability, which is mild cerebral palsy. I walk with a limp and use an additional cane for balance. I believe that the only limitations we have are those which we place on ourselves. They told me that those two things combined were the reason I was a burden, and that I would never amount to anything. Just about every day, my mother would say that her life would be so much more fulfilling without me. Her voice sounded controlling or cold. Whenever I heard her voice, it would instill fear.

I haven’t always been assertive, but I’ve been adamant about wanting to make the most of life. I moved out of my mom’s house a couple of years ago. Neither of my parents are a part of my life. My father lives in the Virgin Islands and doesn’t have phone service. He knows I live on my own, but that’s the extent of his knowledge. I’m financially independent, and even if I’m having trouble paying bills, I never ask anybody for help.

My name is Chelsea. I’m twenty-four years old. I was born premature at twenty-six weeks and was only two pounds, three ounces. I have retinopathy of prematurity. I went back and forth between the incubator and the ventilator, and in the late 1980s the technology wasn’t as advanced as it is now. Too much oxygen was what made me blind. Today I live in an apartment by myself. I’m enjoying the freedom. I can’t even articulate how awesome it is. I also have a part-time job as a transcriptionist, which really helps as well. I’ve never been happier.

Two years ago I was raped. This experience has made me a lot less naive. I didn’t want to be out of the house, and for a while I viewed people differently. I thought maybe somebody else would assault me. I also had bad nightmares. I would wake up very easily, when I heard the slightest sound. I would think that it was my attacker coming to get me. I also had a lot of trust issues.

I’ve been able to gain perspective through the rape, because I believe wholeheartedly in making my life as meaningful as I desire it to be. I just can’t control what other people decide to do. I just trust immensely in myself. So if I’m faced with a similar situation, I will probably handle it with more grace than I did the last time. I will come out stronger, more resilient and more of a fighter.

What do I like about being blind? If you had asked that when I was young, I probably would have said I didn’t like anything about it. But the older I get and the more I interact with people, I would say it’s an awesome opportunity to offer a different perspective to the world. Perhaps I can encourage people to think a little bit differently—or maybe more openly. I don’t wish I had vision. To me, the word blind is just a characteristic, like a hair color or somebody’s height. I think anything can be a disability. The question is, do you let it? I think that’s the real question.

I’ve been lost lots of times. When I was younger I would panic, because truthfully, I didn’t have the skills to get myself out of a situation. I didn’t have the confidence or the actual skills to evaluate what I had done wrong. Now that I’ve attained those skills, I don’t think of it as being lost. I like to think of it as being misplaced. If I remain calm it’s easier to refocus and get to where I need to be.

I’m constantly imagining things. I imagine the nice cool breeze. Of course, if it’s windy I can hear it. If it’s sunny, I can feel the sun on my face or the smell of the air. Metaphorically speaking, I would say yes, I see as good as a sighted person. Being blind actually helps me to be less critical and more appreciative of the world around me. Usually I remember people’s voices. I think every voice has a unique quality, and I pay attention to inflection. I have intuitions and feelings when I meet a person. It’s their voice and the way they treat me and interact with others. Sometimes it is what they do not say. I like when people remember me, so I try to return the favor to the people I have met.

I think prejudice in itself is a disability, because it takes focus away from everything else. I was in a program learning how to become more independent. It was called Adjustment to Blindness. It was just great to be put in different high-pressure situations to see what I could learn. I was walking around Ruston, Louisiana, learning how to use my cane properly. This lady stopped me. Her introduction was, Why do they have you out here? You’re blind. And you got that other disability. Why are you out here? I explained to her—very nicely—that I was learning how to get around independently so I could become more confident. She said, I don’t know about all that! And she walked off—stormed off, actually. When a sighted person thinks of blindness, they react to themselves being blind. It’s hard for them to realize the beauty in blindness. I’ve always said that empathy gets people far, but sympathy gets people nowhere.

I’m not angry that I’m blind. I certainly don’t miss anything, because I don’t know what I’ve never had. I don’t believe that anger is a healthy emotion. However, there are times that I may experience frustrations. I’ve always enjoyed life, and no matter the hand I’m dealt, I always embrace every single thing because I know that I can learn more. I really take pride in finding the joys in things and growing instead of letting something break you. I have to be strong of my own accord, and I shouldn’t expect anybody else to join me on my journey. So if I can always just live to the best of my ability and remain true to myself—that’s my goal.

MARIO AGUIRRE

I work at the Rape Crisis Center. I’ve been there for twenty years working as a therapist with survivors of sexual trauma. I think listening is a rare quality. Carl Jung believed that listening is such a rare quality that people have to pay for it in therapy. I listen with my whole being, or I might say that I listen with my heart. There is a certain amount of risk involved in listening with your heart. The risk is that what you might hear could change you. Listening in itself can be very healing.

I have been working with survivors of trauma for a long time. I believe that sexual trauma is a deep spiritual wounding. There is a tendency under the stress of trauma to disassociate as a primitive defense mechanism. I’ve come to the realization that the more I know, the more I don’t know. I embrace the Buddhist perspective of not knowing. I once had a client teach me a very important lesson. She said to me, Listen, Mario. You don’t have to try to help me. What you need to do is be there for me. Be present. That’s all you have to do. Ultimately, she was right.

My parents are Hispanic. They were always there for me in terms of providing our basic needs. I grew up on the fringe of the barrios. It was a very racist part of West Texas. I always felt like, God, where did I mess up to have been born in this godforsaken place? I got the message clearly that we were second-class citizens.

As a child I did not have any visual impairment. I went to a segregated Hispanic elementary school. The students were all brown faces. The teachers and administration were all white. I grew up thinking I was actually a dummy. When I entered first grade I could not speak English—and I was lost. That was a tremendous disadvantage in terms of my self-image as a student.

My second-grade teacher, Mrs. Orange, terrorized me. I sat in the back of the classroom. I didn’t know what the hell I was doing. One day she demanded, You better have this assignment tomorrow morning—or else. She scared me so bad that the following morning I played hooky. I was afraid. One day led to two days of hooky, two days led to a week, and a week led to two months of not going to school anymore. I would hang out in the alley with a little boy, and I would stay with him and his mom. Eventually I was caught and my parents were notified.

If I had been my mom or my dad, I would have tried to find out why my son was not going to school. This was a time of segregation, so we didn’t do that. My father took his belt out and knocked the shit out of me. I was begging him to stop. He hurt me so deeply that it ended our relationship. I went through adolescence not speaking to this man. Oh, my God, how could a ten-year-old commit such a travesty?

My parents decided to make a tremendous financial sacrifice. They sent me off to a Catholic boarding school run by nuns, and there I learned to compete academically. Every nine weeks when the report cards came out, they rearranged the desks according to academic rankings. The first nine weeks I was second to last. Eventually I moved up to the first row with the smart ones.

My father is blind due to macular degeneration. His sister was blind. My younger sister is blind. My blindness was a very traumatic experience. Macular degeneration is often referred to as an old man’s disease, because it tends to affect people later in life. I had normal vision up until age twelve. When I was in high school I went to an ophthalmologist. After doing all the examinations, the doctor basically said, You are legally blind, and eventually you will go totally blind. It felt like a stab to the heart. I remember thinking suicidal thoughts. At eighteen years old, those words were a death sentence.

I struggled and was unable to accept being blind. It’s difficult to see oneself as a whole person. I realized that the way I was going to get by was through my intellect. So I pursued higher education. I had this hunger for understanding and a curiosity about life. Eventually I was able to pursue a lifelong interest in Jungian psychology. The Jung Center became part of my community. I had a wonderful, loving analyst named Mary Eileen Dobson. She helped me to finally embrace my blindness, and embrace my existential