Anita Rao
I have a complicated relationship with my eyes. They're often what other folks notice first about me, because they're a unique color, a blue gray-green, depending on the day. But since I was a little kid, they've always been a source of some anxiety for me.
I first noticed my vision changing in second grade. I flunked the school eye test, and got my first pair of glasses just in time for Girl Scout cookie season. I remember feeling them fog up each time I stepped out of the cold and inside a neighbor's house and struggling to tally the order sheet to the cloudy lenses. It wasn't so much getting glasses that bothered me, but that year after year, each time I went to the eye doctor, my prescription kept changing and my eyesight got worse. This pattern meant that I'd start getting pre-emptive anxiety days before the eye doctor — the tears would already be flowing once I hit the chair. And all that eye water meant I couldn't read the letters even if I wanted to.
If I'd known then what I know now, I'd recognize this fear and the way folks coached me through it as ableism at work. The technician who said, "Don't worry, you're gonna be able to see well, it's all going to be okay," as if further deteriorating vision would somehow not be. My prescription eventually stabilized and in this moment, with a solid pair of high-power lenses, I'm a sighted person. But that emphasis on vision as a be-all-end-all — that's personal and cultural baggage that it's time to unravel.
This is Embodied, our show about sex, relationships and your health. I'm Anita Rao.
Last week in the process of putting together this show, I learned a new way of introducing myself, which in my privilege as a sighted person, hadn't been in my repertoire.
I know this is audio, but I've heard all of you interviewed and starting with image descriptions and I feel like it just kind of helps center where we are because we're all talking from different corners of the world. So I'd love to start and do that and everyone can say their pronouns. So I am Anita Rao, she/her, I am talking to you from Durham, North Carolina. I'm in a pretty monotone you know a very like beige and green studio. But I can see that there's nice weather outside, so I know there is a window to look out at. I am wearing a jean jacket and a linen romper ready for the heat, and I have some clear glasses and short brown hair up in a bun.
Leona Godin
Excellent. Hey there, this is Leona Godin. Today I am actually speaking to you from the beautiful Cary Institute in the Catskills. So I have no idea what color scheme I've got going on in this room. All I know is that I shuttered the windows to keep the sound from bouncing around, and I'm in this little old school desk right now sitting here. And I've got long brown hair, and I gotta admit, I'm still in kind of my home/jammies. Not looking very glamorous, so I'm glad this is radio.
Anita Rao
Leona Godin is a writer, performer, educator and the author of "There Plant Eyes: A Personal and Cultural History of Blindness." This is my first time hearing her voice. But of all the things I read about her before this moment, there was one phrase I couldn't get out of my head: There are as many ways of being blind as there are of being sighted. It's a truth that's hidden by the limits of our cultural imagination.
Leona Godin
There seems to be this vast dichotomy between the revered blind person on the one hand, so we have in the ancient days, you know, the Poet, the Prophet, the Homer, the Tiresias. And in our modern age, kind of the superhero or the super-blind on the one hand. And then on the other end of the spectrum, we have the kind of pitiable blind beggar or buffoon on the other end. And there's not a lot of middle ground, you know, there's not a lot of place for there to be something that might be just considered normal. Like the idea of a normal blind person, I think is just not even in the vocabulary of a lot of sighted people.
Anita Rao
Leona is just one of millions of Americans living with low or no vision, whose day to day is shaped by this false perception of extremes.
Leona Godin
I mean, pretty much every blind person I know has had the experience of walking down the street, you know, minding your own business trying to get to work or whatever. And somebody comes up and says, "Oh, you're such an inspiration," you know, or "How did you do that?" or, you know, "Do you need help?" And there's this kind of, yeah, you feel a little bit like a spectacle, because it's impossible to imagine, for a lot of sighted people, that we would just simply be living our lives, you know, the way everybody else is.
Anita Rao
The belief that being visual is the best or only way to be, is called ocularcentrism. It's a term that Leona explores in her book. But long before she had the technical language for it, she inferred that messaging from how folks treated her when she started losing her vision as a kid.
Leona Godin
I started out life with "normal" vision, and when I was 10 years old, I didn't have very bad vision at all back then. It was maybe 20/30 or 20/40, very minimal, but they couldn't bring it back down to normal with lenses. And so that kind of started my mother and I on this journey of trying to figure out what was wrong with my eyes. And I went to a series of doctors, and they couldn't figure out what was going on, and so they started making stuff up. I mean, quite literally, you know, looking back on it now, I remember doctors saying things like, "Her eyes are growing too fast for her body." And we finally make it to this retinal specialist, and he was so frustrated. He looked into my retinas and he couldn't see anything quite yet, or he just didn't know what was going on. And so he actually turned to my mother and said, "Well, no wonder she can't see because you've been taking her to so many eye doctors." So that was a good diagnosis. But my poor mother, you know, she was crying and frustrated and stuff. And so he finally looked again, and then he finally spotted it and that kind of set off a whole set of tests and things.
And eventually, I was diagnosed with a degenerative retinal disease. The more common one is RP [retinitis pigmentosa], and it usually starts with tunnel vision. But mine started with like, a little bit out of my central vision. And of course, central vision is what you use for seeing detail for reading. So, you know, I wasn't able to read by the time I was maybe 16 or so — it just kept getting worse. You know, I look back on it now and it feels like it caused me to doubt authority in a certain way. This feeling of realizing quite early on in life that, you know, the experts prefer to appear to be experts, even if what they're saying is a little bit ludicrous. And that fear of sort of cracks in authority was something that I really picked up on and embraced the idea of sort of rebelling against authority figures that pretend to know everything and just don't and can't.
Anita Rao
And that really drew you to punk — punk music and punk aesthetic and punk culture. Talk to me about the role that that played in your life.
Leona Godin
Yeah, I mean, I really think that it had so much to do with, well, one: feeling that I was different. Or, you know, feeling like I had this eye disease that nobody knew anything about. And this is back in, you know, the Stone Ages when there was no internet where I could find other like minded people or anything like that. And so it was quite an isolating experience on the one hand, and that feeling of difference was something that — I didn't really hide it. I felt completely comfortable talking to people about it, but there was also a lot of shame, not being able to read. And so those two things combined to give me the desire to find an outlet, and I think that punk rock and the punk aesthetic was something that was very attractive to me. And it didn't hurt too that because I didn't have any detailed vision, you know, I didn't have any central vision, that, you know, people with, like green hair, you know, were people that I could always recognize and that drew me to them. It wasn't quite so common as it is now. So it's like oh, the dreamy guy with green hair in science class.
Anita Rao
Losing your central vision makes it hard to read, recognize faces and drive. Over the course of the next few decades, Leona's central vision continued to decline. But for a long time, she still had peripheral vision. This meant she was often perceived as sighted — an experience she shares with her friend writer James Tate Hill.
James Tate Hill
I had just gotten my driver's license and my parents had, through my uncle, procured a salvaged 1989 Mustang, and I thought my life was about to change. And it happened first and my — gosh, I don't even remember which eye went first, I believe my left eye — but it did not occur to me until a routine trip to my optometrist that I was experiencing blindness.
Anita Rao
Over the course of the next few months, JT found out that he had Leber's hereditary optic neuropathy: an inheritable condition that causes you to lose your eyesight. Within six months, it became difficult for him to use a computer. And he started to do most of his reading and learning via audio. But James didn't want anyone to know. And he spent the next 15 years trying to hide his low vision from most everyone, from friends to romantic partners.
James Tate Hill
My two best friends remained my two best friends, but making new friends became something beyond my skill set because eye contact is so crucial when you're meeting new people. And, I began treating my blindness as something that I didn't feel was important to disclose. Because as soon as I did, it became the central feature of my personality or life. And so, I tried my best to erase this central facet of my identity.
Anita Rao
And, you mentioned these low expectations, and that was something that you saw reflected back to you even from people who were in positions in which they technically should be thinking in all ways about all the possibilities for your future. Like disability counselors at a college; tell me the story you tell in your book about that experience visiting colleges, your senior year of high school and this meeting with a disability counselor.
James Tate Hill
I had planned to go to West Virginia University, the giant state school in my home state where my best friends were going. And so, my parents and I scheduled a visit to speak to the disability counselor who was an older fellow who told me that the best gift I could give my parents my first semester of college was a report card have straight Cs. And, the last couple of years, as math became precalculus, and chemistry and anatomy physiology started to get the better of me even before my vision went, I was no stranger to these Cs. But to my parents, I was still this gifted kid from elementary school who had skipped a grade. And, the three of us could not have been more disappointed by his low expectations. And this is a disability counselor — this is somebody who should automatically assume that someone who is blind or deaf or has any disability at all, has the same capability and goals as somebody without a disability.
Anita Rao
It's crazy to read that story and hear about how it impacted you in that moment. You what, you ended up going to a different school, you did get opportunities to write and practice creative writing, and you became a really successful writer. But, it was a long time before you ever wrote a blind character. So, I'd love for you to tell us about the decision to write a legally blind protagonist for your novel "Academy Gothic" and what that transformed for you.
James Tate Hill
Yeah, it was during a writer's conference when I heard the writer Jhumpa Lahiri give the keynote when I had this grand epiphany. And, at this age, I had achieved a degree of self acceptance, and I was in a relationship with the woman I would marry and to whom I'm still married very happily. And, Jhumpa Lahiri talked about what a revelation it was when one of her writing teachers told her she should consider writing about the Indian American background that she has, as opposed to the upper middle class white people who populated all the short stories and novels — the John Cheevers and even the Whartons — that she grew up thinking, well, this is literature, this is what people read. And I thought, hmm, I wonder if it would be interesting to give a character the blindness I have and also to give him a sense of the self-denial and play that up for comic potential. And so, I wrote about my blindness first in fiction, which proved to be the gateway genre or the gateway form before I was able to realize I hadn't told quite a bit of the story yet and then moved to creative nonfiction for "Blind Man's Bluff."
Anita Rao
"Blind Man's Bluff" is JT's memoir that came out in 2021. One of the folks he was most excited to have review it: Leona. The two of them connected through the writing community, swapped strategies for reading aloud to an audience and banded together to push back against what Leona calls the inauthentic stories about blindness.
Leona Godin
You know, there are very few blind novelists out there. I mean, JT is one of the few that I know. And, it's been really hard for us to get the word out that, like, the vast majority of these stories that are being told about blind people are written by people who are not blind, who are not low vision. And so, there's this whole vast realm of, like, inauthentic stories that then, as blind writers, we need to fight. And, I tell a story in the book about a friend named Laurie Alice Eakes, who is a very, very prolific romance writer, and she has yet not been able to publish a story speaking to her own blindness — like, an authentic, fictionalized version of a blind woman. And she's, you know, after publishing 35 books, she's still got editors saying to her things like, "Oh, that doesn't seem like a realistic blind character," you know, so it's like, there's so much to do. And in doing it, it's very hard to do it alone.
And so, meeting JT, meeting some other blind writers has been really amazing. Because, it does two things. One, we can talk about the struggles that we're facing, that are very real, about those kinds of stereotypes, but it also just helps that we're pulling each other up. I mean, I think that community has been important for so many different minorities, right? Because I think that the tendency from the dominant culture is to only want, sort of, one different person in the room at one time. So you can only have, sort of, one blind writer in the room at one time, and that's what kind of keeps these inspirational stories going. Once we have community and we can really pull each other up, and talk about blind culture, and think about how we can reflect upon each other, and dialogue with each other, and show that vast diversity within the blind and low vision community, that's when we can have some success that will matter.
James Tate Hill
In fiction, you become a lot more attuned to your emotional truth when you're no longer hiding a central aspect of your identity. The community of writers has been exceedingly helpful to me in owning my voice and having readers connect with this authentic experience that was, for so long, the opposite of why I thought I wanted to be a writer. In the book, I talk about a conversation with a friend where I believed that I could hide behind my writing, and this non-blind author was who I was. And that was where what people knew about me would start and stop, as though the writing itself could hide who I was.
Anita Rao
No longer hiding transformed JT's internal world and freed him up to more openly use adaptive tools in his work as a teacher, or when reading his writing for an audience. The same has been true for Leona. For a long time, she steadfastly rejected using a cane, and now she uses one regularly and even has a nickname for it: Moses. The pet name was born from a phrase she read in the memoir of a fellow blind writer, Jim Knipfel. He talks in his memoir "Slackjaw" about parting the red seas of New York City with his cane. Leona documents some of the interesting history of tools and tech for low vision and blind folks in her book, "There Plant Eyes." Some of that tech has shifted in the past few decades, as we heard from some of our blind and low vision listeners.
Alexander Castillo
In terms of tools, it's mostly just a white cane. I'm blind, and so I use this white cane to navigate around the city, my environment, my client's homes, my workplace. I also use an iPhone with VoiceOver. The screen reader will read what's on the screen for me. And, the other piece of adaptive equipment I use is a computer with a screen reader called JAWS. And, it again does the same thing as the phone does — it will read things out, except I'm using a keyboard instead of hand gestures to navigate.
Evelyn Valdez
I am a full JAWS screen reader user. I have Jaws downloaded onto my Windows work laptop. I use VoiceOver as the screen reading technology on my iOS devices, the work iPad and the work iPhone.
Michael Smith
Oh, yes. The Amazon Echo. I read books and articles, history books, science books, mostly nonfiction books.
Anita Rao
You just heard from Alexander Castillo, Evelyn Valdez and Michael Smith. In his message to us, Michael also mentioned Newsline — a free audio service for blind and low vision folks that includes newspapers and magazine articles. Canes, which we've mentioned a few times, took on the white cane form we now recognize in the early 1920s. And they're still a common tool for many folks in the low vision and blind communities. But, some take this tool and make it fashion.
Lachi
One of the things I really love to do as a blind woman is toss on really tall heels and walk down the street with my glammed up cane with a dope outfit. And, I love it when folks turn around, and then they see this tall woman with this glammed up cane and this amazing outfit in her long braids — an Amazon — walking down the street, and they just have to dive out of the way.
Anita Rao
Meet Lachi.
Lachi
Hey there, hey there, hey there, and thank you for having me.
Anita Rao
Lachi is an award-winning recording artist, songwriter and inclusion advocate. And, despite her fierce love for life in New York City, I'm gonna let you in on a secret — she does have some North Carolina ties. And, she got her degree from my alma mater, UNC-Chapel Hill. But before that, Lachi was a kid growing up in upstate New York and West Philly. She has been legally blind since she was born.
Lachi
You know, earlier was mentioned, not really owning your voice. And, that was really how things were for me for a long time. I was having sort of my shoulders grabbed and turned into whatever direction others felt I needed to turn. And, that pretty much informed a lot of my childhood. Because you're blind, folks think that you are not the one to be spoken to, but your handler or your caregiver, or whoever else around you, is the one to be spoken to. I have a great example. I think, I remember I was in an airport by myself, and someone came up and said, "Oh, does she need help getting, you know, from here to into the gate?" And the person they were speaking to was a complete stranger that happened to be standing beside me, and they're just like, "Who? What? I — what? I don't know this person." Exactly. It will, it would go that far, to make sure that you are — they just, you're not being viewed as an equal. You're not being viewed as competitive. You're not being viewed as receiving the same stimuli, the same social stimuli, as those around you. And, that was a lot of my life for a long time.
Anita Rao
So knowing that, and seeing that, how did that shape how you were coming up as an artist, and once you started getting into the music community and music scenes?
Lachi
There are two things that success in the entertainment industry are necessary. Number one, the technology. Especially if you're a recording artist, or a producer or an engineer, but also the social aspect — navigating networking, being able to cultivate relationships. And, one of the things that I don't think enough people talk about when we talk about blindness or other disability issues, is the social anxiety that comes with it, the social debilitation that comes with constantly being seen as less-than, that comes with constantly having to work so hard to keep up with your counterparts. And so, one of the things I'm proudest of is just getting over that hump of networking. As a blind person, I would stand in the corner and not know who to look at or where to turn or how to deal with being in a dark industry room late at night at an important event. You know, if you don't wave back to the right person, you could lose a whole record deal. And, being that I'm what I call sighted passing, people would, I don't know, categorize me as standoffish or categorize me as unsociable not knowing that I'm just the most social butterfly of butterflies, because I wasn't giving myself that opportunity to openly express who I was at these events. Which I overcame, and now people can't get me to shut up.
Anita Rao
Well you're mentioning this tension between, you know, wanting to be known for your singing and wanting these opportunities, and as you've grown into wanting to kind of own and be open about your blindness, and wanting to be seen in all of your identities. And you have a song, "Duality," which I feel like speaks to this a lot, and how you're dancing in and out of and trying to exist in all of these spaces at once. I'm curious about that artistic expression in terms of your image and fashion. I know that you think a lot about your look, and how to glam up all of your daily objects and so, I'd love for you to talk to me about that, about the glam cane and about this artistic expression of creativity through fashion and image.
Lachi
Yes, so I love to express myself through the way I look and the way I feel. I wasn't always very fashionable growing up, I didn't think I was supposed to be. As a musician, when a manager or an agent or a label, especially in the pop dance EDM world, the first thing they'll say, when you finally get that sit down is, "Well, how do we market you? We don't know how to market this. This doesn't make sense to us." And it's, you know, it's very highly not about the music, it's about this. Or, "Should we use her as a shtick? Maybe we can say 'The Blind Act.'" And, I said to myself: No, that's not gonna happen. So, I wanted to make sure that I felt as confident and beautiful and comfortable as possible. I couldn't figure out how to connect my inside with my outside until I just accepted who I was. And now, you know, it's just Lachi everywhere I walk. Everywhere I walk, I walk Lachi first.
Anita Rao
We weren't able to get some of Lachi's music to play for you right now, which kills me, because you can totally envision her just owning the streets of New York City when you listen. But, when you have time, look her up and jam out, especially to "Time Will Tell." Lachi's success as a recording artist is just one part of her story. In the past few years, she's become an outspoken advocate for more inclusion and access for folks with disabilities in the music industry. She was an advisor for the most recent Grammy Awards, and successfully advocated for a built-in ramp, ASL interpreters, and live audio description and captioning. This work was championed by the organization she co-founded — RAMPD: Recording Artists and Music Professionals with Disabilities.
Lachi
You know, it honestly really started with me Googling music and disability, and, you know, organizations or whatever. And, you know, what came up were organizations that were not necessarily for professionals, but perhaps for parents trying to help their children get instruments or maybe something to do with schools and elementary kids. And, you know, once you turn 18, you're still a person with a disability, it doesn't mean you have your whole life together once you turn 18. But, there are so little programs. And, I myself as a professional musician — who's out there touring, who's out there getting accolades — I wanted to be able to start fostering, or at least even having a community of people who can relate to that, and can advocate on the level that I could advocate, that can get into those rooms and speak the same lingo as these nondisabled artists that are professional, or that are, you know, top established artists.
And so, we moved forward and we have done a lot. We're forming this coalition and alliance of top performing artists with disabilities that will be that next step for people looking up and going, "Hey, I want to see myself on TV, I want to hear myself on the radio as a disabled kid or as a disabled independent artist, trying to make it." And, you know, we're intersectioned, not just as women or as Black folks and Hispanic folks, or folks in the queer community, but we have so many different disabilities. Everything from physical disabilities to intellectual disabilities, developmental disabilities, to rare disease, chronic illness, immunocompromised situations, or neurodiversity, deafness, and we're working in all facets of the music industry. But also, because we're so determined and driven, a lot of us do so many other things. I myself am actually a novelist. And, you know, we're here to celebrate our disability culture. Music is one of the best ways to get someone involved in your culture. We learned a lot about Blackness through hip hop, we learned a lot about rural culture through country. And so, I'm here to let society know about disability culture, through music as well.
Anita Rao
Having Leona, JT and Lachi all together in a conversation, or at least as together as we can get virtually, was electric. They all kept referencing one another's words, art and influence. Synergy is the best word for it. I know I'm going to be looking out for their names in the future.
Leona Godin
The blind writing community, the blind artistic community of which, you know, Lachi is a part as well, is just very exciting to me. You know, to kind of celebrate my people is something that I feel very strongly is the only thing that's going to really shift mainstream culture in our direction, as opposed to us, kind of, always clamoring to, like, you know, let us in let us in. No, let's change the mainstream culture.
Anita Rao
Embodied is a production of North Carolina Public Radio-WUNC, a listener supported station. If you want to lend your support to this podcast and WUNC's other shows on demand, consider a contribution at wunc.org now.
This episode was produced by me and Audrey Smith. Kaia Findlay also produces for our show, Amanda Magnus is our editor. Jenni Lawson is our sound engineer. And Quilla wrote our theme music.
If you enjoyed the show, we have a little assignment for you. It's only going to take you one minute. Text this episode to five friends who you think will like it. You sharing the word about Embodied is what helps new folks find our show and it means so much.
Until next time, I'm Anita Rao, taking on the taboo with you.