Portland author Joshua James Amberson has a rare genetic condition that may eventually lead to blindness. His new book, “Staring Contest: Essays About Eyes,” is a deep meditation on eyes, vision, and what we see.
Note: This transcript was computer generated and edited by a volunteer.
Jenn Chávez: This is Think Out Loud on OPB. I’m Jenn Chávez. When Portland author Joshua James Amberson gets interested in a topic, he embraces it and goes deep. And something on his mind lately is eyes and vision. Not just his own though - a rare genetic condition that affects his vision makes the topic a part of his daily life - but everyone’s, the histories and social nuances of vision and vision loss. What and how we see. Amberson has written a new collection of essays about all this called “Staring Contest: Essays About Eyes” and he joins me now to talk more about it. Joshua James Amberson, welcome to the show.
Joshua James Amberson: Thanks so much, Jenn. It’s really an honor.
Chávez: It’s an honor to have you with us. So I would love it if you could start us off with a reading from the book’s preface,”Origin Stories.”
Amberson: Sure thing. This is from the very end.
[Reading] ‘This is a book about eyes. Before I started having trouble with my eyes, I never, at least consciously thought about them. I never thought about how the act of seeing dominated my life and experience of the world. Like most people, I just saw. I started thinking about eyes because I had two, because there was something wrong with mine. I didn’t consider them an interest. It took me years to realize how much time I’d spent casually, lazily, considering eye-related bits of daily life, the complex social politics, linking the curious history of eye charts, the emotional impact of our head lighting.
‘But after I identified the eyes and vision as being interests of mine, I began looking more, looking at things I’d never thought I’d look at. Now I think about eyes because I want to. It’s a preoccupation that feels good to be preoccupied with. Even if I wish I’d never been chosen by the subject. I’ve come to believe that a single subject has the power to open up the world, that it can serve as an access point to every other subject, that it can make connections that otherwise might not be made.
‘In time, a staring contest became the easiest way for me to think about this. Looking long and hard to figure out what’s already there. I never thought of staring contests as combative. To me, they’re connective, an agreed upon chance to be playful, while also looking deeply. So I like to imagine I’ve been staring in an effort to share, to think broadly about the world, to let other people in on a series of questions I don’t have answers for.’
Chávez: Thank you. Joshua, you were born with a rare genetic condition called pseudoxanthoma elasticum, or PXE. First, what is PXE?
Amberson: It is a calcification of the tissues in the body and so it tends to manifest most in certain parts of people with PXE, as it’s called, are affected in different ways, some in the legs and extremities and some in their digestive systems and some in their eyes and some in various different ways. I’ve always called it my eye condition, because it started affecting my eyes pretty early on. Many people don’t have retinal issues related to PXE as early as I did. I started having retinal hemorrhaging in my mid-twenties and many people don’t have it until the fifties or sixties or seventies. So it’s a bit of an unusual case and it’s something that was diagnosed in my early teens, but it was something I tried to ignore up until the point I started having retinal hemorrhages.
Chávez: And so you got this diagnosis years before it had effects on your vision, like you’re saying, although you did experience that earlier in life than many others with PXE do. When you did start experiencing these effects, what was it like? What did you experience with your vision?
Amberson: Well, during a hemorrhage, it’s a pretty rapid vision loss. And that’s relative, I suppose, but it would change every day and get worse and things take on a kind of curved nature. So everything has a fisheye quality to it, and this was just in my right eye. Initially, my left eye was compensating and I was sort of able to not notice it for a while, or to ignore it. But before I was able to secure funding for my first treatments, 15 years ago, I let it go pretty far the first time, just out of financial necessity. So that was maybe the most extreme case I’ve had. In the years since that though, I’ve had many, many hemorrhages.
Chávez: You write about this personal narrative of your diagnosis and the beginnings of your treatments, but you weave it through so much more. And one of the things that you include in this book are essays about the histories of different tools or approaches to vision, sometimes woven in with some of your own narrative, and one of these focuses on eyeglasses. You started wearing glasses as a kid. What is your relationship with glasses? And did your research into them affect how you thought about them?
Amberson: Yeah. At this point in my life, I love glasses, not just as a beneficial tool but I like them. I just like to see them in the world and I think they’re interesting, but researching them did give me some perspective on their history and my own history with them…I was a very shy kid and getting glasses in 1980′s rural elementary school felt like a social death to me. I thought about it very dramatically and was very worried that I would be bullied or just excluded because of them. And I don’t know how much of that was true, but that was what was in my head at the time.
So I have maybe a little bit of a complicated history with them because I tried to avoid wearing them for so long. And the history of eyeglasses did put that into some perspective too and until less than 100 years ago, they were treated as a visible sign of disability. There were even medical journals that would suggest not wearing them all the time. And so there was some history to back up the feelings that my younger self had had. It did change how I looked at my past and my entire life relationship with eyeglasses.
Chávez: So as you grew up, like most of us, you were influenced by popular culture which told you things about the world. Part of this book is meditating on how different aspects of vision or vision loss were represented in pop culture. And a few of these really stood out to me. One of the essays was about the harms of the cartoon,”Mr. Magoo.” Can you first describe Mr. Magoo? And, and what did that character tell you about sight growing up?
Amberson: Yeah, Mr. Magoo, the character, is a low vision older man who walks into situations very assuredly and causes mayhem, essentially. And I think for most viewers the joke is his vision, and not so much his overconfidence, but just the fact of how little he can see. So, yeah. It was a very enduring cartoon as well. I had taken six different forms of various titled “Mr. Magoo” shows, and a live action movie and Christmas specials - I think the first, or one of the first animated Christmas specials. So just for a character most people don’t think about, or that I have never really heard anyone have a lot of love for, or fandom for, really just stayed on the air and in pop culture relevance for a really long time.
Chávez: So another one of these essays about representation that really stood out to me, was the one that you wrote about Stevie Wonder and his album, “Inner Visions,” which I have been listening to nonstop ever since I read your book - so thanks for that. You write, ‘The title of the album, along with the richly imagistic lyrics, seem to imply that below the surface there was an internal self, a truer self.’ What draws you toward this idea, an internal self with inner visions, separate from external vision of the world around us?
Amberson: I think part of that and this, the book, though there isn’t a clear chronology throughout the book because the main narrative line is, like you said, weaving in and out. And with the publisher, Perfect Day Publishing Local Portland Press, we didn’t wanna have years along the way and overburden the reader with a lot of time-based things that they had to keep track of. But the book is about me figuring out a lot of things for myself too, and being ignorant at various points. And part of that ignorance is, I think, the limitations that society and myself at various points put on people who are blind. And I think that what you just read is part of that, the ability to see doesn’t determine who the person is or the person’s goodness or worth in the world. And that’s been part of me not looking at the possibility of blindness as being a tragedy. It would just be a change.
Chávez: You have another series of essays throughout this book based on interviews that you did with blind or low vision artists working in different mediums and you call them all, ‘One of the styles of living.’ Why was it important to you to seek out and hear from these artists?
Amberson: I did a lot of research around blindness and cultural attitudes throughout history. And a lot of that I left out, because it just didn’t feel like my story to tell. I’m still sighted and I have some permanent damage from having so many hemorrhages over the years, but right now I’m still able to drive, for example. So I just felt like, there’s so many people that have educated me through their work and I wanted their voices in this book, although it’s hopefully not overloaded or packed with quotes from other people, I already had more than I’ve ever put in any other writing I’ve done.
It had already had a polyphonic quality to me that I was bringing in a lot of different people to speak alongside me. So it just felt that the next step of that was to invite these artists in to tell their stories and all the different ways of being an artist who is blind in the world. And just stepping back, just those long conversations I had that each got edited down to a few pages, less than 1,000 words for most of them. I really just stepped into a listener and editor role for those, but I wanted them to read somewhat like an essay, like another essay in the collection.
Chávez: One thing that really comes through in this book and I think in some of these essays, these conversations you had with artists, is how there are just so many different experiences within blindness and vision loss and how it’s not the simple binary that some people might assume. And you just mentioned, though your vision is affected by PXE, you are a sighted person. At one point you write about how blind people make up a community that you’re not currently a part of, but could become part of at any time. What do you think that’s meant for your relationship with this community?
Amberson: Yeah. I don’t actively consider myself a part of it because…I just feel like someone who’s a listener and friend and on the outskirts of those communities and especially the folks who are in the book itself, to have them trust me with their words and stories. So yeah, maybe that answers the question.
Chávez: Yeah, I think it does. And I really loved that you included those perspectives. And I think one of the people who you spoke with even said, there’s such [a] wide spectrum, even within what is considered legally blind. So, yeah. Thank you for speaking to that.
I want to ask, are there ways in which writing this book has empowered you to move forward into your future?
Amberson: For sure, yeah. About 10 years ago, I wrote one essay and interestingly mixed a historical research thread into it. It was braided, an essay in that way. And I thought, OK, I’ve done it, I’ve written about my eye condition, check it off the list. And then it kept coming back into my writing. And eventually, about six years ago, some friends and mentors convinced me that it was a book, if I thought thematically and I thought in terms of the things that I think about all the time, that other people might not be thinking about or considering. And so I’ve been thinking back especially since the book came out in the last month that I just, yeah, where I was 10 years ago when I wrote that first essay and how I was still writing in part, like I mentioned, from a place of fear, more than acceptance. And I feel like for the most part, I’m on the other side of that now.
And also, because I tried to make the book so expansive, that a lot of things, ideas, stories that have been bouncing around my head for a long time, are now on the page. And in that way, I’ve let go of them and allowed space for other ideas and stories to bounce around my head. So it feels like just a huge step in my life, yeah.
Chávez: Joshua, thank you so much for being with us today and for writing this book.
Amberson: Thanks so much for having me, again.
Chávez: I’ve been speaking with Portland author Joshua James Amberson. His new book “Staring Contest: Essays About Eyes” is now out from Perfect Day Publishing.
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