What It's Like to Go Completely Blind in Your 40s


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What It's Like to Go Completely Blind in Your 40s

When theologian John Hull went completely blind, he kept a series of diaries to remind him of life before he was plunged into darkness. A new film explores how he began to make sense of the world again.

"If I didn't understand blindness, it would defeat me." These are the words of eminent theologian, John Hull, who in 1980 lost his sight and was plunged into a lifetime of total darkness.

Few of us understand blindness. Even when we try and imagine what it might be like to be blind, we can only ever see it in relation to the visual world, rather than a world in, and of, its own. For many, total blindness represents one of our greatest fears: to live in a perpetual night, unable to see the people and places we love. When John became blind in his 40s, after several operations to try and save his sight, he endeavored to give meaning to—and therefore understand—his blindness by keeping a series of audio diaries in which he recorded his new, non-sighted life over the course of three years. Those recordings eventually became a book—Touching the Rock—which remains one of the most articulate accounts of blindness ever written.


In 2011, filmmakers James Spinney and Peter Middleton took Hull's original audio diaries and turned them into a short film. Notes on Blindness premiered at the Sundance Film Festival in 2014 and subsequently won an Emmy award. Now, the pair have turned Hull's audio archive into a full-length feature, using contemporary interviews with Hull and his wife Marilyn. The result is an affecting, moving, and deeply personal portrayal of blindness, the likes of which we rarely get to see.

We caught up with James and Pete to learn more about John's life in darkness, and how he came to terms with it…

VICE: Notes on Blindness started life as a short film first—what led you to make a feature?
Pete: We always new there was a story in there. But it took a bit of time for us to find our way of adapting or interpreting that material. It's such an interior journey that John goes on, set in his memories and his dreams, that we felt the conventional approaches to documentary weren't quite as well suited. So we started experimenting with different styles and approaches. We took individual passages and started to make them into short films. The first one was released in 2013 and it was just a single scene about rainfall—where he talks about how patterns of rain create depth and contour to environments. That then led to a longer feature.

So the longer feature was always the endpoint?
James: Yes, because the short passages only hint at John's journey. Although he begins keeping the diaries almost as a process of grieving for the sighted life that he's leaving behind, the transformation that he goes on across that three year period and the eventual resolution he makes to no longer live in the nostalgia of the visual world, but to live in what he called "the reality of blindness," was something that needed a longer treatment.


And it's that transformation that is central to the film. As a viewer you really get a sense of John's journey—at the beginning I felt claustrophobic, but by the end I also felt the liberation John did.
James: John was always keen to state that his was only one experience of sight loss. Only 5 percent of people registered as blind and have no light sensation, and for a lot of people the experience isn't necessarily as negative as John's. His process was a very purging one initially, but by the end of the diaries, like you say, he registers a sense of focus and clarity, particularly in his writing, that he doubts would have been possible had he retained his sight.

Pete: He often described his experience, for the first three years or so, as that of being a blind person with a sighted person's brain. And it wasn't until he learned to live wholly in blindness that he was able to move forward. His memories were beginning to fade—he was forgetting what his wife and children were like—and so he consciously rejected 'the nostalgia' of his sighted life. It was that decision that led to the blooming of what he described as a new "conscious personality."

I felt that the film also reveals how blindness is still a quiet taboo, especially in a world so dependent on a visual language—there is the sense that people don't know how to respond to blindness.
James: John's diaries are full of passages in which he analyzes instances in which he feels subtly marginalized in the presence of sighted people, examining the tiny moments of social awkwardness, attempting to understand how and why they take root. John was conscious of how blindness can fluster or confuse certain social situations, where sighted people feel embarrassed, gauche, awkward, or uncaring in his presence. He is aware of how blind people often provoke extreme reactions: sometimes ignored, sometimes the center of attention. At times, writing takes on an instructional quality, suggesting ways in which to break down these everyday moments of awkwardness.


There's a scene when one of John's friends says it's like he doesn't want to see again—it seems as though they can't understand his acceptance of his situation.
Pete: Yes. But for a long time John said he wouldn't accept his blindness either. In the film he says "I would learn to live with blindness, but I would never accept it." It's quite complex, that question of acceptance. But in terms of other people and friends there are so many assumptions that we make all the time as sighted people which we constantly have to question. That's why first person voices are so important. Especially in fiction and in filmmaking, when most of the portrayals of blind people are by sighted writers and directors.

Do you think there is a lack of honest portrayals of blindness in culture?
James: So often blind characters are semi metaphorical. John surveyed the cultural representations of blindness himself, it was part of his process [of coming to terms with his blindness]. He explored the connotations of the word blindness—there binary concepts of light and dark; insight and ignorance. That dichotomy is firmly rooted in our visual culture.

It becomes apparent in the film just how restrictive our vocabulary is—we can only talk about blindness with the language of sight. Even John continues to use "seeing" words.
James: John reflected on how much of our language is underpinned by visual imagery. He talks about how sometimes he'd say, "nice to see you" to someone and they'd reply, "you don't really mean that, do you John?" He found these moments interesting. Both of them knew exactly what he meant, but the flow of conversation had been momentarily broken by the acknowledgement of something. John wrote that though language is shared by both blind and sighted people, "the structure of our everyday conversation presupposes a sighted world."


Even making a film about blindness seems contradictory. The film feels quite dark and shadowy—I was always trying to see more. Was that one way in which you tried to address that issue?
James: As you say, the starting point of the film is, in a way, paradoxical and that became a challenge. That [shadowy] approach to lighting was something that we developed with our cinematographer Gerry Floyd over the years through making the short films. The initial principle was that we would try to use what's called 'negative fill,' large areas of shadow with pockets or fringes of light, to create something of a psychological environment. We tried to use framing as well and avoid wider shots that would give a better geography of the scene and we tried to frame out eyes, to suggest something about loss of eye contact.

When we think about what it must be like to go blind, there are things it's easy to assume we would find it hard to live without—not being able to see our children or partner's faces perhaps. But I get the impression that those losses weren't the most affecting for John.
Pete: In one of the first diary entries John made he talks about visual memories and clinging to them, but by the end of the diaries he talks about how he has to increasingly remind himself that the children actually have a face because that sense is now receding entirely. He almost has to remind himself of the existence of the visual world.


He only wrote the diaries for three years. Why did he stop?
Pete: He said he didn't feel he needed them anymore. They were born out of the need to understand his blindness because if he didn't, it would destroy him. But increasingly he found that he was reaching a level of understanding and was finding peace with it. When we focus on John's experience it really makes us wish John could be here talking about it because he died as we were making the film and we feel slightly apprehensive talking for him.

Was that a difficult time?
Pete: His death was a shock, it happened about two weeks into production. And it was such a collaboration working with John and Marilyn. We were going up to Birmingham to visit them every couple of months. And John talked quite possessively of the project, calling it "our film," so it did feel strange continuing without him and we wish he could be here to celebrate it and to talk about it.

You've also made a virtual reality piece to accompany the film. Was that always a plan?
James: It was partly a response to the fact there was so much rich audio material—John had about 16 hours and we knew immediately that only a fraction of that would be able to make it into the film. And some of it is absolutely fascinating.

Pete: The VR focuses John's perceptive and sensory experience of blindness. The process of mapping what John referred to as "acoustic space," how patterns of sounds can bring depth and detail to the environment around him.

Before watching the film, and listening to John speak, I hadn't really considered how sound can help establish surroundings.
Pete: John talks about how sound brings people and places into existence. When there is no sound, the world dies. The VR takes that as its inspiration.

Is there anything you hope people take away from the film in particular?
James: For us, being able to introduce people to John's work is really important. When we read John's book, one of the first things we were most excited about was how it made you feel a heightened awareness of everyday experience. Pete: Marilyn always points out that the film, whilst being the story of John's adjustment to blindness, is not just about blindness—it's about loss. And ultimately, about interpreting loss as change. That's important.

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