When you picture what a blind person sees, what do you imagine? Do you see light and shadows? Do you see colours? Do you see nothing at all? An all-too-common misconception is that all forms of visual impairment have the same effects. But in reality, vision loss is an incredibly variable experience, both in terms of its causes and how it affects one's sight.
To better understand what it's like to live with vision loss, we spoke with five visually impaired women with very different conditions. Some women see shapes and shadows; others sees complete darkness. Some acquired their impairments as children; others lost their sight in adulthood. They discussed their everyday lives, how they navigate the world, and, most importantly, how their blindness has helped shape who they are, but hasn't held them back.
In addition, photographer Melody Melamed shot the women's portraits to show how others see them. Then, artist Liz Nielsen created images inspired by how these women see the world in order to present their unique perspectives.
Click through to meet each of these extraordinary women, and discover what it's really like to live with a visual impairment.
Interviews have been edited for length and clarity.
Eilyn, counsellor and part-time graduate student.
Can you describe your visual impairment?
"I have Sturge-Weber Syndrome, which is a more neurological condition, but that’s been pretty stable. My visual impairment came about because I got seizures when I was a very tiny baby, so my optic nerve became pretty compromised, to the point I had some visual loss over a time. I have glaucoma, my visual impairment, and I am legally blind from my left eye, but I do have some vision from my right eye."
What can you see?
"I can see from a pretty close distance. I can't see at all from afar. Everything is clearer from close proximity. Though I don’t see anything from my left eye, I do perceive lighting and colour contrast."
How would you describe the way you move through the world?
"I perceive a lot with my senses. I try to rely a lot on my hearing, and not to really focus on my eyes and exhaust them. I also use other assistive technology. Like, my laptop has software that will speak to me. So I find a balance between technology and using my hearing and other senses, and that's how I get a sense of what's going on around me."
How do you think that ability to really focus on listening has helped you in your career and your schooling ?
"I think it has really allowed me to not just pay attention, but to be mindful. You have no choice but to understand other people and to demonstrate that you're genuinely caring about what they're telling you and that someone can help them."
As a counsellor, what groups do you enjoy working with?
"It's challenging, but I like working with young adults and adults. It's very easy for me to engage and get a sense of where they're coming from, depending on their own disability... My own disability became an asset in a way, where it was just really easy just to observe and listen to what people were telling me. It just helps to put yourself outside of yourself. You learn so much."
Is this the career you always wanted?
"I always wanted to do human service. At first, I was convinced I wanted to be a social worker, but I realised that, as fun and as really rewarding as social work is, I really like helping people one on one, more individually."
What do you like to do for fun when you're not in school?
"We're always going out with friends or exploring, going out for coffee, we're going sightseeing, meeting people. I really like to be in touch a lot with nature, but socialise with other people and always get to know people. I'm all about trying new things and just using creativity."
Photographed by Melody Melamed.
From Liz Nielsen:
"Eilyn is a highly compassionate person. Her empathy emanates from her. She loves community. She loves adventure. She loves to be near water. She has a fiery and dynamic spirit. Eilyn can see some yellows, oranges, and reds. In her piece, there is a circle, a group of friends in the foreground, connected through gift energy, a glowing line, and there is a landscape on the top half, made up of several horizon lines, including sky and grass, fire, and sand."
Illustrated by Liz Nielsen.
Eliza, 30.
Can you describe your visual impairment?
"I've been blind since I was three. I was born with a lot of eye problems, so my vision deteriorated. I can see bright light, so I can see if it's sunny or cloudy, and sometimes I can see if the lights are on at home, but that’s about it. I don’t see shadows or colours or anything. It's just light or dark."
Is there a specific name for your impairment?
"No, I just had glaucoma and cataracts and I had some cornea transplants. So, I had a variety of conditions. The actual cause ended up being a rare infection that spread from one eye to the other, just by coincidence. A whole hodgepodge of things."
Do you have any memory of before you were three?
"I was in the middle of preschool when I lost my sight. And I remember that there was like a yellow slide at my preschool, but I don’t really know what yellow is. Like, I know yellow is a brighter colour or can be, but I don’t know how accurate my concept of yellow would be."
How would you describe the way you move through the world?
"I use everything. I'm always paying attention to the texture of the ground and what's happening, whether the sidewalk is cracked or it's smooth, and whether it's going up or down under my feet. And then I'm always listening to track where people are and where they're moving, as well as using echolocation, which is the idea that even when I snap my fingers I can tell, okay, there's a bit of an echo in this room.
"And then I'm using smell. That can help me pick out all sorts of things — if there's a flower shop or a grocery store that has fruit out on the sidewalk or the Dunkin' Donuts that’s near the train station or the train station itself sometimes. All those things."
How did you learn echolocation?
"I didn’t. It was just sort of something I always used. And then at some point I learned that it had a name. So I've actually learned that like, oh, that’s called echolocation, I use that all the time."
I know you do improv. How does improv help you build out your world?
"So there are a few things. One of the things about improv is that you don’t use props. Instead, you pretend like you're using them — they call that object work. So, if you're faking like you're in a bar scene, you should be holding some sort of drink or pouring one. And this is stuff I never think of. Like, I couldn’t see for long enough to where I developed the idea of using my hands to talk. That makes no sense to me. So learning about how to pretend to use objects was fascinating, even in the sense that like, okay, let's say you're in a bar with your friends, are you holding like a shot glass or are you holding a beer?
"And the main basis of improv is that whatever someone says, you have to back them up. So, if I said, 'That’s a huge cup of coffee you have,' you couldn’t say, 'No, I'm not a coffee drinker. This is tea.' You have to be like, 'Yes, well, I need 10 cups a day or I fall asleep all the time.' They call that 'yes, and?' So you build on every concept by saying, 'yes, and?' What I realised was that no matter what happened, no matter whether I tripped on the edge of the stage or I bumped into someone when I was trying to walk by them, they would have to build it into the scene. That made improv one of the most freeing things that I've ever done, because they would just build it in. And if they wanted me to like be in a certain place or go a certain way, they would just like drag me over and it didn’t matter."
What would you say to someone who might be in a similar situation as yourself, who is interested in doing something like improv, but thinks it might be impossible or too scary?
"So, I think the key is that improv is all about trusting in your seeing partners to collaborate with you and make a scene that is interesting or entertaining or amusing. Everybody who does improv has to take that risk and assume that everyone will just take them for who they are and build something great with them. I think it's really a safe place to risk being yourself, because your partners and the people you're improvising with won't let you fail."
Photographed by Melody Melamed.
From Liz Nielsen:
"Eliza is an athlete. She runs, swims, and bikes, with swimming being her favourite. Eliza's piece has a few layers. When she swims, she can see which direction she is going because she can make out extra light where the sun is. The two circles in the photograph represent Eliza and something or someone outside of Eliza. Both look like swimmers, both wear swim caps, also, the two circles spell out letters in a flattened Braille E, and also if you cover up one, there is an A. Eliza had a sister named Alexandra who passed away. She has a tattoo on her that includes a drop shadow. The two circles hold this drop shadow, this shift in light. They are sun and swimmer. They are both swimmers. They are sisters. They are light and shadow. Eliza holds a poem inside her heart by Charles Ghinga. It was once said to her. It reads, 'If I could hold light, in my hands, I would give it to you, and watch it become your shadow.'"
Illustrated by Liz Nielsen.
Emilie, artist.
Can you describe your visual impairment?
"My left optic nerve was severed in an accident. I was riding my bike in Brooklyn, and I got hit by a truck in 2010, when I was 21. They don’t know what happened with my right eye, because only my left side of my face was hit from the impact, but the right side was not, so they think maybe it's a TBI, a traumatic brain injury, that has caused the blindness, because my head swelled up like a watermelon after the accident. I was in the hospital at Bellevue ICU for six weeks before I came out of my coma. And then, I had to go through a lot of physical and occupational therapy, and then find rehabilitation training."
Can you describe for me what you see?
"I don’t see anything. So I have no light perception, that’s the medical term for it, NLP, which means there is no light at all."
How do you map out your world? What do you use sensory-wise?
"My hearing is a big one. Also, touch, like tactile. When I walk down the sidewalk with my dog, London, she's guiding me, but I can feel my feet when I'm getting to a curb, and I know when it's time to stop, because I feel the curb underneath my feet. Or I have that time and distance judgment where, when I'm crossing the street, it's almost like another sense. It's not, like, tactile or anything. It's like, you know in your body that you're coming up to the curb, and you need to step up, based on how many steps you take and how long you were walking. But it's not like I'm counting my steps. I can just feel it in my body.
"Even when I'm walking inside my apartment, I don’t count my steps, like, oh, from the bathroom to the couch I have to walk 15 steps. I just tilt my body a certain way, because it's like you're sensing your body's movement, and you can feel when you're about to get to the couch, like magnetism or something."
What was the adjustment period like, between the accident and now?
"It's been six years since the accident, and I guess the adjustment was like something like two and a half years or three years, because I wasn’t up and walking for a year after my accident. Getting a sense of my surroundings and how to move independently in the world did take a lot of training. It was scary, but I never doubted myself. I never said I couldn’t do it. Part of it is just practice and learning to trust your instincts. You get that gut feeling where you feel like, oh, there must be a trash can over here, I can smell it. You know or, oh, there's a pizza place a couple doors down, I can smell it."
What do you think is the biggest difference in the way people interact with you now?
"Everyone is different. With my friends, when they introduce me to people, they don’t even mention I'm blind. When I found out that my friends thought of me that way, I thought, that is such a huge compliment, and I really like that they understand that your disability isn't what labels you, you know?
"And I feel like a lot of people who meet me feel sorry for me or maybe just can't see past the disability to think there's a person who is living her life to the fullest, like everything that she's doing is in her control... The first thing a lot of people want to do is try to help me, which is fine, but I don’t always necessarily need it."
Do you make art full-time?
"I do. I work in a studio in Long Island City. I try to work there maybe like twice or three times a week, because I'm also a museum educator at the Metropolitan Museum of Art, and I teach classes and I give tours there sometimes. And I proofread books in Braille. So those are my side gigs."
What has been the biggest change in the way you make art?
"Before I went blind, my work and my sculptures and paintings were very monochromatic. I only used black and white or grey scale or really neutral colours, but very little colour at all. And now I'm so inspired by colours and I like thinking about colour relationships and how colours react to each other visually. I have a really good memory of colour, and I can still see it if someone describes the colour to me really specifically. That’s my favourite thing, when people describe colour to me. I use a lot of colour in my sculptures now. When I mix colours together, I ask people, does this look like watermelon green to you or does this look like banana yellow to you, you know? And they’ll tell me honestly, but yeah, so that’s something that I like to get help with."
Photographed by Melanie Melamed.
From Liz Nielsen:
"Emilie is a visual artist, and she and I talked about her own artwork and how I could make a piece that related to some of her ideas mixed with some of my ideas. Emilie has been thinking about watermelons and also palm trees. These things remind her of home. I ended up making two pieces for her, a stacked still life of fruit, because she wanted her piece to be close to human scale. And then the palm tree as seen through a window — like a postcard or portal back in time — to evoke nostalgia. Additionally, we discussed a colour she can sometimes make out behind her eyes. She said what she sees is like a black curtain and occasionally there are flecks in it, the colour she said is like a raw sienna mixed with a burnt umber. I made this colour in light atop the watermelon."
Illustrated by Liz Nielsen.
Abigail, 24.
Can you describe your visual impairment?
"I have retinitis pigmentosa. It's often referred to as RP. It's a degenerative condition of the retina, so a gradual loss of vision over time. And I was diagnosed when I was four, already having a pretty severe loss at that point. It's said to be hereditary, but nobody in my family has it, so I got the wild card."
Could you describe exactly what you see?
"A lot of it depends on lighting. Eyes are a lot like cameras, and the retina gauges light, depth perception, and colour. Those are the main areas. So if there's more lighting, then I can see better. But if there's too much light, then stuff gets to be glare-y. So I wear sunglasses a lot of the time, both in and outdoors, if the lighting is too bright inside.
"Then, there's also a narrowing of the field of vision with RP. I have severe tunnel vision, and what I can see is only central. And at nighttime, I have night-blindness. Since it's darker, I can't really make out anything except lights and silhouettes of things if I'm outside. I have to get around with either a guide dog or a cane, otherwise I wouldn’t go very far."
How do you map out the world? What senses do you use and how do you use them?
"I use a lot of my hearing. When I'm getting around in the city, I listen to the traffic when I'm crossing the street to know if it's safe to cross or not. If traffic is moving with me parallel, then I know that it's okay to cross."
I know you like to run. Do you consider yourself a runner?
"I am. I just did a triathlon on Sunday and I'm gonna be competing in a championship for other disabled athletes in California in August. I like endurance sports. I find them really fun and rewarding."
Have you always been doing sports?
"No, I only started running four years ago. Where I used to live, I did a lot of backpacking and hiking and yoga. And I can't really go hiking in the conventional sense in New York, so I was trying to find free ways to get exercise. And actually Eliza told me about this group called Achilles. Their mission is to promote mainstream athletics for people with all different types of disabilities. The New York chapter meets up twice a week, and volunteers and athletes come together, and they just run through Central Park. I started running [with them], and I've been running ever since. I was convinced to do a triathlon two years ago, so Sunday was my fifth triathlon.
"Our Achilles chapter has a triathlon team. Even though it's a sport you do kind of solitarily, each athlete works with a guide. On the run, I have a sort of fabric tether that my guide will hold one end and I hold the other. And they’ll just give me verbal cues when we're in the park or on a road, saying we're going to move around a person or there's a pothole like three feet away. Then for the biking portion, we go on tandem cycles, so I just have to pedal. I don’t have to worry about where we're going. For the swim, we also use a system of tethers. In the world of athletes with disabilities, there aren't standards for tethers. Everybody kind of uses their own thing. I use three race belts and my guide and I both wrap one around our upper thigh and then we link them in the middle, so when we're in the water we stay together that way. And if I'm pulling a complete 180 from whichever direction they're going, they’ll be like, 'hey, we're going this way.'"
Do you like to camp, too?
"Yeah, I love camping. I did a week-long trek on the Appalachian Trail a few years ago with some friends and I used my guide dog. She would guide with just the leash. And then I used one hiking pole to tap out what's around me. We hiked in like a single-file line, so whoever was in front of me would tap out with their own hiking stick, like, 'Hey, there's a boulder here.'"
What would you say to someone who might be in a similar position as yourself, but too intimidated or daunted by the prospect of getting into triathlons and camping?
"I think it's just a matter of being willing to do things unconventionally. I think some people are scared of that sometimes. Even with choosing to use my cane, I didn’t want to use it because my friends weren't using it — and like, oh my God, everyone will know I'm blind. And then, when I started using it, I realised that people are nicer than we tend to think they are. We often have unrealistic expectations of other people and what they're going to think of us. So, I would just say that you should be willing to do something that’s unconventional, and if it makes you happy and you have fun and there's some sort of barrier, that there's probably a way for you to get around it if you just think outside of the box."
Photographed by Melanie Melamed.
From Liz Nielsen:
"Abigail is a classically trained musician. She is also a runner. She is also a cancer survivor. She has incredible integrity in her spirit. She has a good sense of humour. She enjoys harmonies is a natural connector. She likes to balance combinations of flavours. Her piece is a road, a mountain, a beautiful night sky, and a finish line that is made up of celebration flags. All of it is composed with triangles, to echo classical compositions and lead the viewer into her world."
Illustrated by Liz Nielsen.
Nefertiti, 30, employee at the New York Public Library and full-time student.
Can you describe your visual impairment?
"I had a brain tumour as a child, called an astrocytoma, and luckily it was benign. It was removed and luckily there was no brain damage, just a blood flow stopped to my optic nerve, and that caused my visual impairment, which is known as retrograde optic atrophy. Basically, it just means that my optic nerve and brain don’t communicate, yet I have some usable vision. My eyes are totally healthy. It's just they don’t communicate well with the brain."
What do you see exactly?
"Well, I see there's somebody standing behind you. When I first came in, I was struck by the light over here, the window is back there.
My trouble is more with print, reading print. Even when it's large, I'm just not efficient with it. So I am a Braille reader. I'm faster. When it goes dark, I might as well not have any vision at all. If there's lighting and stuff, then that helps."
So you can see shapes and colours, generally?
"Yes. Doctors have not been able to explain it, because atrophy means dead, basically. You know? So to have optic atrophy would imply that I was totally blind, but I'm not. So we don’t know. I've never really explored it maybe to its full extent. I've just always been sort of grateful to have what I have. And I just leave it at that."
You're like a walking miracle.
"Oh, that’s the least of it. I'm also a kidney transplant recipient. My family was told that once I hit puberty I was gonna experience some hormonal imbalances and things like that, but never was it predicted that my kidneys would fail or anything that drastic. Yet, at 19 they found that I was really, really, really sick, and by 20, I needed a transplant. My mother matched, and here I am 10 years later."
"They say that people with disabilities or that blindness can cause a lot of other disabilities. I don’t have any evidence to back that up; it's just what I've heard. So a lot of people aren't what I call vanilla blind, meaning just blind and that’s it. A lot of people have secondary or tertiary disabilities, and I just happen to be one of those people. As a result of the immune suppression medication I'm on to keep my body from rejecting the kidney, they have an adverse effect on my pancreas, so it makes me diabetic too."
How do you map out your world? Do you use other senses?
"Definitely. I rely very heavily on my cane to tell me physically what there is, but I also rely on my sense of hearing very much. Smell, touch, although I don’t go around touching things out on the street, if I can help it. Banisters and things like that, that’s a different story, but you know it's dirty out there."
Do you have any memory of being able to see?
"No. The brain tumour was found when I was three, three and a half, or so. And I actually spent my fourth birthday in the hospital getting the brain surgery done, so I don’t really remember what it's like to see fully. This is all I know."
When you're not in school, what do you like to do for fun?
"Read, listening to music, I love to sing. I sang most recently for a benefit, and two of the girls here were there, my teammates at Achilles, Eliza and Abbi. I do that, too, at a triathlete level. I've yet to do a triathlon, because always something comes up. So I've only gone through the training, I've never actually...been able to follow through and do a triathlon like Abbi and Eliza. They are beasts with it. They are amazing.
"And I love hanging out with friends and going to new restaurants, new experiences that I've never experienced before. I love amusement parks. I love them. I love anything with, like, very intense sensations. Because I can't see fully, I'm probably not as afraid as someone who can, maybe? The closer to danger I am, the more alive I feel. So I love roller coasters, anything that goes fast, anything that makes me feel. Anything that allows me to feel."
Do you have anything else you'd want to add?
"Blind people are like anyone else. We just happen to not be able to see properly. It's been rough, you know, accepting my blindness, but once you do and once you accept your lot in life, I think that you can really go far and the sky is the limit and I hope that other people start to recognise that more and more.
"It wasn’t until I was like 27 that I said, 'You know what, enough is enough. This is how I am and it's not gonna change and it has to be okay.' I guess without getting too deep into it, it took me leaving my ex. That’s one huge thing. I found myself on my own and literally needing to just fend for myself. And I had to do it as a blind person, so that’s part of it. Also, I was just tired of being miserable all the time and trying to hide something that everybody knew. Like everybody can see it, you know? It's like trying to hide something that’s right out in the open. It's pretty silly."
What specifically has changed since then?
"I go out more. I'm more confident now. If people try to grab me or something, I speak up for myself now. I'm willing to ask for help when I need it and not be ashamed of it. The shame has gone away. I still struggle with my health issues, but my blindness, that’s a thing of the past. I'm cool with it now. If anything, I'm pretty proud of the fact that I can handle it."
Photographed by Melanie Melamed.
From Liz Nielsen:
"Nefertiti sees in parts. Her vision is like a tunnel where one fragment or shape can be seen at a time. Then, in her mind, she collages these shapes together to make up a whole object, a whole face, a whole body. I made her a diptych, because holding several fragments together in one's mind could seemingly result with different images. I also like the idea of looking in a mirror when you are zoomed-in, like when putting on mascara — how everything else falls away and becomes abstract shapes."
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