David Remnick: Earlier this year, we published a story about Protactile, an emerging language based on touch that's increasingly used by DeafBlind people. It was written by Andrew Leland, and one of Andrew's subjects was a man named John Lee Clark. Clark was born Deaf, and he lost his sight when he was young to a condition called Usher Syndrome. He became a poet and a scholar of literature, and a new collection of Clark's work is out this week. It's called How to Communicate. Andrew Leland was eager to speak with him again.

Andrew Leland (narrating): I first encountered John Lee Clark on an email Listserv. Poetry Magazine was about to publish an essay he'd written, and I wrote to him asking for a copy. It was a casual request which began what was, for me, a life-changing correspondence. I have a related disease to Clark's, it's called RP, and it's causing me to slowly lose my sight. In Clark's writing, and in our correspondence, I was struck again and again by the way he described his experience as a DeafBlind person. Despite the rest of the world's tendency to imagine DeafBlind life in tragic terms, as a land of silence and darkness, Clark's writing is full of humor and life.

A running theme in his work is the importance of touch, a sense that sighted and hearing people tend to diminish or ignore. Let me give you an example, a poem of his called Clamor. It's being read here by Halene, or Hal, Anderson, a woman who frequently works with John as an interpreter.

Hal Anderson: Clamor. 

All things living and dead cry out to me 

when I touch them. The dog gasping for air, 

is drowning in ecstasy. it's neck shouting 

Dig in, dig in. Slam me, slam me, 

demands one door while another asks to remain 

open. My wife again asks me

how did I know just where and how 

to caress her. I can be too eager to listen: 

The scar here on my thumb is a gift 

from a cracked bowl that begged to be broken.

Andrew Leland (narrating): To read, and write, John usually uses a digital braille display which converts the text of his computer into refreshable dots of braille on a little electronic device the size of a computer keyboard. As we corresponded, I began to imagine him in his home office in Minnesota, his cat asleep on his feet, playing that braille display like a virtuoso, firing off manifestos and poems and essays at all hours.

John Lee Clark (Hal Anderson interpreting): Great. Yes.

Andrew Leland (narrating): We met up earlier this fall when he was visiting St. Louis. 

Andrew Leland: John, I'm so glad to see you again, touch you again, and thanks so much for taking the time to talk to me again.

John Lee Clark: Yes, absolutely, Andrew. This is great. It's great to be here with you.

Andrew Leland (narrating): That's Hal Anderson, again. She's interpreting for John here using a language called Protactile. Unlike American Sign Language, or ASL, which is a visual language, Protactile happens entirely on the body. Think of rapid-fire taps, squeezes, traces, hand shapes and presses that are all articulated on the hands, arms, shoulders, upper chest, lower thighs, and even the back. 

Andrew Leland: My hand that's on your knee is giving you feedback. Sometimes when you say something that, as frequently happens, rocks my world blows my mind, I vigorously agree with, I will pat your knee like this. If you start saying something that I'm gravely, gravely disappointed with, or disagree with vehemently, then I'm going to swipe and wipe, because that's the basic Protactile that I know. If you crack me up, I do a spidery, little tickle on your knee.

John Lee Clark: Yes, absolutely.

Andrew Leland (narrating): Clark's first language, when he still had his sight as a child, was ASL. It's when his family spoke at home, and we started our conversation talking about that early part of his life.

John Lee Clark: The first day that I attended school, I went on the bus and I got on the bus, boarded it sat down, we took off. My mom didn't trust that I was going to actually get there, and be okay. She pulled up behind the bus, she followed along the bus in her car and watched me. When I got off the bus, she approached me, and said, "How was it?

Were you okay"? I said, "I'm fine, but the bus driver seems to forget all how to talk. All of their vocabulary. They couldn't talk with me." She said, "No, no, no, they're hearing." I said, "They're hearing? What is that?" My mom had to explain to me that not everyone in the world spoke as we did. I'm learning that there are other people in the world who essentially couldn't talk. That was a rude awakening.

Andrew Leland: I love that inversion of how hearing people tend to frame Deaf people, and it reminds us that the life of ASL is equal to that of English, and there's no reason why we need to center English in the way that the hearing world does.

John Lee Clark: Yes, absolutely. Spot on Andrew.

Andrew Leland: Yet here you are with this magisterial book of poetry in magisterial English. Something happened along the way, where you befriended English. When and how did that happen?

John Lee Clark: It's complicated. It's a little complicated. Being a baby, I immediately was immersed in the language of my family. Because I came from a Deaf family, other kids knew that I was a source of information to them. They didn't have a whole lot of other Deaf role models in their lives. I ended up being that for some kids, I took a leadership role as a child among my peers. As I became more and more Blind as I got older, for example, in the sixth grade I went to a school for the Deaf as opposed to that little Deaf program. At that residential school, the school for the Deaf, I had to abide by Deaf customs and norms. I wound up at a crossroads because I wasn't Deaf. I was DeafBlind. At that age even, I was DeafBlind.

I did not fit the Deaf mold. For example, I'll just give you an example here. Waving hands to get someone's attention is something that happens oftentimes. I wouldn't see someone who waved at me, and I would just go about my business, and they would think that I was being extremely rude because I wasn't responding appropriately. People started to disregard me, to push me away. I was more isolated at that point. I got involved in books. I was like, "Well, if you guys are going to go on without me, well then I've got better things to do than to go off with you too."

I was hooked on books at that point, because of what they are. Infected, I guess, with readerly disease, I guess you could call it. [laughs] Books did a whole whole lot for me. They helped me to get through a really tough time.

Andrew Leland: Any titles or authors come to mind as primary vehicles for that literary disease that you contracted in sixth grade?

John Lee Clark: Funny you ask. What happened was I entered a drugstore, and they had some mass-market books on the shelf. I had to decide to get a book. "What books should I get?" I browsed for a little minute, and, of course, happened upon a super thick book. All these other slim volumes, those aren't for me. I need to go after the biggest book I could find. It happened to be Ken Follett's The Pillars of the Earth. I ended up going back to that drugstore to buy other books. Again, those mass-market books that they sell. I noticed though, in reading them, that it was hard to read them because their print was so small. I was trying to figure out how can I get a hold of books with bigger print.

I went to the Goodwill, and they had lots of hardcover books. I graduated to those because they had larger print. After that ended up going into frequenting used bookstores, and then Barnes, and Noble, I'd go through the bins to see which books had the largest font, that was large enough for me to read comfortably. I didn't choose books based on the story, the content, the topic. If I could read them, if they were legible to me, or visible I guess, the font size was comfortable, then they passed muster. It actually helped me. It did take me on a certain trajectory in literature. I mean, Kafka, Nabokov, those kinds of authors that they just happened to be that their books were printed with larger print.

If I wasn't Blind, I would probably have just stuck with the mass market media and maybe I wouldn't have moved out of that genre altogether, so hidden blessings, Andrew.

Andrew Leland: I love that. You talked about this moment when you're realizing that your vision is changing and it's changing the decisions you make and how you live. I want to read a poem that I think connects to that experience, which, by the way, is in a very different way, I guess is something that I'm going through myself. I identify a lot with what you're saying too, just in terms of being Blind and yet I'm about to read this poem off the page, and that's not an oxymoron, I guess.

John Lee Clark: Absolutely. Absolutely.

Andrew Leland: Okay. Goldilocks In Denial.

Goldilocks was in deep denial and refused to use a white cane

That's how she got lost in the woods, stumbling over tree roots and things

Then she hit a wall

A house

Door.

She entered and wrinkled her nose and remembered the Annie movie from when she was little

It was the part where Daddy Warbucks said I smell a wet dog

It was dark inside so she did her ginger duck walk and zombie arms until she came against a table with some food on it

After emptying a bag of Doritos she wandered deeper into the house

Kitchen bathroom living room small chair too small medium sized chair too hard big recliner ahh that's much better

When the three bears got home they were happy to find that they had company

Papa Bear shook Goldilocks awake and asked who you

When she didn't answer Papa Bear put his paw under her hand

She snatched her hand back and said I can see

Papa Bear said okay and asked again who you

She said I'm from Long Island here vacation

Papa Bear asked when arrive here you

She said my name Yellowcurls

Papa Bear asked need help you

She said will soon graduate May

Papa Bear gave up and turned to Mama Bear and said denial obvious misunderstand misunderstand

Mama Bear said sad yes nothing can do leave alone

Baby Bear asked if he could play with Yellowcurls

Mama Bear thought about it and said no better not Yellowcurls denial means hard talk can't play good

So the whole bear clan went about their business as if Goldilocks wasn't sitting there

She jumped up and stamped her feet and said not nice you ignore avoid me

She whirled around to make a dramatic exit but ended up in the bedroom where she stumbled and fell into a bed

She stayed on the bed for a long time pretending that she had planned to sleep there all along

John Lee Clark: Nice.

[laughter]

It shows a little bit of denial as a psychological state, but what happens later on, if a person is losing their vision or whatever, things are overlooked. When accidents do happen, people sometimes will, "Oh, well, I intended to do that." It's a psychological effect that happens that I went through myself, I noticed myself doing it. A person usually does that when they're not in a great place, but it's a part of the journey, I would say. It's part of the journey.

Andrew Leland: There's that moment in the poem when Papa Bear puts his paw underneath her hand in the way Hal's hand is underneath yours right now. To me, just because I've spent time with you and I've been experienced to Protactile, it's clear to me as a somewhat initiated reader that that's a moment of saying, "Let's communicate tactilely." Part of her denial is to say, "No, no, no. I can see. I don't need to communicate tactilely." Can you talk about that aspect of becoming DeafBlind and then the way it changes how you communicate?

John Lee Clark: As I said, in that period of time where I maybe was in denial and things were getting muddled for me, and I probably did respond, as Goldilocks did, off the mark when people mentioned or said just certain things to me, certain comments. I didn't respond in kind. I then became a role model for other Deaf people. I'm a teacher, I provide training, I get other DeafBlind people on board. When I do that, there are other people who are in that denial phase. That's tough for me as a teacher. I think part of that frustration that I have with them potentially is my own frustration at myself, my past self coming up and revisiting.

Andrew Leland: I want to read another poem. This one makes me laugh every time I read it in part because, as a journalist who is writing about DeafBlind communities, I feel like it's a little bit of a warning sign. It's from Three Squared Cinquains. It's one of the Cinquains, The Reporter Is In Awe.

The reporter is in awe 

of a DeafBlind man 

who cooks without burning himself!

Helen Keller is to blame.

Can't I pick my nose 

without it being a miracle?

John Lee Clark: [laughs]

Andrew Leland: I laugh because I'm a reporter and I'm in awe! and yet I want to know how to be impressed with you, John, and your accomplishments. You're strangling me now.

[laughter]

John Lee Clark: You should not be in awe!

Andrew Leland: But I am! And itt raises, I think, a tricky and interesting and important question about disability, which is that on the one hand, you're doing incredible things like you've written an incredible book of poetry. On the other hand, there is such a risk of becoming that reporter who's in awe. I wonder how do we avoid that infantilizing, praising you for picking your nose, while still recognizing the wonderful stuff you're doing?

John Lee Clark: Well, I don't know what to advise. [chuckles] I think, for me, I'm a little lucky. One concept maybe, one place of struggle is when lots of people with disabilities are crying, screaming for access. "I want access. I want access. We have these rights. We want our rights to be protected." I think that attitude might lend itself to certain other attitudes in response. For me, I think I take things a little bit different. My take is a little bit different. I think it can actually be a boon. It can be a benefit when we have less access to the mainstream because it means they have less access to us.

What that means is we then have at our disposal this beautiful community, a community that isn't being thrust upon by outside forces. We have a whole wealth of things that we can then develop, and we don't have to be stuck with just one world within. We can journey into and create all kinds of different approaches and things because we don't have anyone else breathing down our necks, expecting certain things, wanting certain things.

Andrew Leland: Let me read another one of the Cinquains just to add it to the conversation.

John Lee Clark: [laughs] Go for it.

Andrew Leland: I think it's a riff on Emily Dickinson. Am I a Nobody Too?

John Lee Clark: Yes, you got it.

Andrew Leland: Had some help from my wife.

Am I a nobody, too?

I'm sorry to disappoint, 

but I am. Yet nobody 

would let me be one,

not even when I catch 

a bus stinking of Nobodies.

John Lee Clark: Well, so, yes. Maybe if some readers buy my book, they'll know I'm a DeafBlind poet at time of purchase. They're in awe just holding it in their hands. They haven't read a single poem, maybe. They're just in awe even finding out the piece of information of me being DeafBlind. "Wait, a DeafBlind person got a book of poetry published, published a book of poetry? No way." The awe is there already. I hope in those instances, in those cases, I hope that when they open that first cover, I hope that what strikes them first and foremost is a sense of disappointment.

I want them to be disappointed, and then I want them to go, "This isn't what I thought." Then I hope that they return to the text for the right reasons, Andrew. I have to tell you, I'm sorry that I am selfish. I'm a selfish person. I hope that people are in awe because the poetry they read strikes awe in them, and that they are amazed by the quality of the poems in the book, that's my hope. My selfish hope, Andrew.

Andrew Leland: When we were setting up this interview, you made a joke over email about this tendency where people don't believe that the interpreter is really interpreting what the DeafBlind person is saying. When I heard that I felt really sad, but I also thought really that's not going to be something that we're going to deal with today. Then I was talking to a friend who's very bright and really should know better, and he was like, "How do that Protactile is really a language and that it's not just the interpreter speaking for John or for the DeafBlind person?" My heart broke a little bit. What do you say to that person, to the people out there who may be well-meaning but still find themselves in awe and even in disbelief of the idea that Protactile has the richness that it does?

John Lee Clark: I'm not too worried about saying anything to them, to be honest, because I do trust. I have faith in the listeners, Andrew. I trust that what they're imagining is wrong. I have faith that they are going to misconstrue some things and misconceive some things but in that misconstrual and in some of those misconceptions they're going to happen upon some things that are true. Many oppressed communities are really concerned with image and with representation, and they stress out about it. They worry, they take pulse and they say, "Are they recognizing us? Are they really seeing us for who we are? How are we being portrayed?"

There's a lot of worry on the community's part about PR. I don't have a real connection with that feeling because those of us in the DeafBlind community, the experiences that we've had have been so rich that, honestly, I don't really care. I don't mean that in a rude way. I don't mean I don't care about these people. No, I have friends that are hearing and sighted and I adore them. I love them. That's not my point. My point is that I'm not going to deliberate over how to convince other people to approve of me and accept the language I'm using.

I'm not going to be scanning the horizon for naysayers. I'm going to be like, when this book is published, "Hey, if you're into it and that's something that you're eager to delve into, do it. If it doesn't float your boat, move on." That's with a shrug, I'm too busy to worry much about what that response is in terms of what other people are thinking.

[music]

David Remnick: The poet John Lee Clark talking with contributor Andrew Leland. Clark's new collection, How to Communicate, is out this week. We heard the voice of Halene Anderson, who translated from spoken English into Protactile.

[music]

 

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