Depictions of disability in cinema can be awkward, at worst insulting. So who better to see a film on the experience of blindness than that most image-conscious of creatures – a teenager, who just happens to be blind? Jane Renton took her daughter Lily to the cinema.
Lily is the first person to tell you that she finds assumptions about how her disability ‘feels’ irritating. Her experience of blindness is unique. Her condition has been present since birth. It is a genetic condition and her visual experience has always been the same. This is her normal and it is as individual as she is.
So, when I suggested that we should go to the premiere of a film that sought to describe blindness, her first reaction was – “I don’t know what it’s like to be properly blind. I can see.”
The reality is that the majority of people registered as legally blind have useful vision. Lily is one of them. She is also prickly about anyone commenting on, or attempting to appropriate her blindness. She is a typical teenager who hates to be pigeonholed.
The only way she could properly approach this film attempting to describe the experience of blindness was by seeing it as the trauma that it clearly turns out to be.
Though blindness is central to this film, the real theme is loss. Once this was clear to Lily, she could relate. Loss is universal and relatable to everyone – disabled or not.
Notes On Blindness is a feature-length drama documentary focusing on John Hull, who lost his sight in 1983. The academic and theologian began to document the remarkably multi-sensory experience of losing his vision on hundreds of audio cassette tapes, and it is crucially this first-person perspective that forms the body of the film.
John, who died last year, worked alongside film makers James Spinney and Peter Middleton to recreate his unique and often painful journey from loss and frustration, through to acceptance and a realization of a deep residual and renewed beauty. This struggle for acceptance struck a deep chord with Lily, who still finds acceptance of her condition challenging.
His wife Marilyn, who also made a cameo appearance in the film alongside her husband, attended the premiere in Sheffield. She spoke about how closely they had been involved in the dramatization of their family scenes, which involved working with actors who lip-synched the actual recordings. As a respected academic, he was also a compelling public speaker, and she reflected on how much her husband would have enjoyed the promotion of the film and what a pity it was that he wasn’t there to enjoy ‘the fun bit’.
Necessarily a visual medium, film doesn’t seem to be the most obvious choice to illustrate this journey into darkness. But it really works. And it works because we tend to forget that the eyes are just a part of the processing of light into image. Even after he has technically lost his sight, John carries on ‘seeing’ images – some remembered and some imagined. His dreams become a hyper real experience.
There is a real sense of intimacy to an account that was clearly a personal journal. There is a clear authenticity to his candid recounting of the highs, lows and frustrations of life as a working academic and hands-on father that resonated very clearly to Lily.
A clear example she related to was his frustration with obtaining large-print copies of books.
“Do you remember the poster-sized worksheets they used to give me at school?” she said, recalling the acute embarrassment of being singled out with clumsy kindness by teachers.
For John, the lack of academic literature in an accessible format was deeply frustrating – and meant that he had to set up his own band of readers to make his own library of audiobooks. Lily cares more about not being able to get the latest magazines in large print. Thank God for iPad-format magazines.
Alongside the premiere of the film, there was an immersive virtual reality (VR) project, based on the sensory and psychological experience of blindness, as described by and experienced by John. It is a magical and highly interactive experience that complements the film, with each scene addressing a memory or a moment from John’s audio diary.
It is not at all dissimilar to another VR experience that is doing the rounds at the moment, which promises a similar experience of autism. The Autism TMI VR Experience, launched on June 12. It is the latest event in the National Autistic Society’s Too Much Information campaign.
So how was the VR experience of blindness for Lily?
“I really liked it,” she said, “I mean, it was nothing like I can imagine. I can’t imagine how horrible it must be not to be able to see anything – to lose your sight like that.”
Essentially, it bore no resemblance to the visual impairment that Lily has, or how she processes her own visual content. Her blind is not John Hull’s blind – and I really don’t think that is the point. This is a film about loss and dealing with loss. The film itself is an attempt to recreate the way that John Hull experiences his own sensory journey. It is unique and makes no claims to appropriate anyone else’s journey through sight loss. But it is arresting and moving with no segue into bathos. If it had, Lily would have little time for it. As she says – “I’m not just the blind kid, you know. Get over it.”
Notes on Blindness is in UK cinemas and on video-on-demand.