Blinding my Hero

I began my PhD in Creative Writing in the autumn of 2012 in the afterglow of the hugely successful London Olympics and Paralympics and on a wave of hope of empowerment and equality for disabled people. However, in reality, the situation for disabled people in Britain was becoming increasingly difficult and has continued to worsen throughout my three years of study.

With my PhD novel, The Summer of Love, I wanted to address this, to find a way to reach out and connect with readers. My novel needed to hypothesise, to examine difficult and disturbing issues arising in the England I was living in and to consider the ‘what if’s’; i.e. what if disabled and vulnerable people became society’s scapegoats and what if this led the way to social cleansing and euthanasia? I needed to find a way, through craft and imagination, as well as applied research, to convince a reader that the power of my novel would carry them through the difficult terrain of politics, of socio-economics and of my own personal, furious, interpretation of the intricacies of contemporary England. To address my research inquiry, my novel had to resonate on many different levels with many different readers, not just be a single aggrieved political tract.

I decided, therefore, to create a novel that hypothetically asks what could happen if the UK government sanctioned state-sponsored euthanasia as a social cost-cutting exercise? It is a fiction about the welfare system, about disability and vulnerability; more than that it is a novel about power and powerlessness, about love, courage and freedom.

For many years it has become a mark of commonplace courtesy and intellectual rigor to note occasions when racism, sexism, or class bias creep into discourse…Yet there is a strange and really unaccountable silence when the issue of disability is raised: the silence is stranger, too, since so much of the left’s criticism has devoted itself to the issue of the body, of the social construction of sexuality and gender. Alternative bodies people this discourse; gay lesbian, hermaphrodite, criminal, medical and so on. But lurking behind these images of transgression and deviance is a much more transgressive and deviant figure; the disabled body. (Davis, 2006: 5)

I needed a disabled protagonist who was not defined by their disability. With regard to this, there were some essential concepts I had to explore in order to deepen my understanding of the current state of play with respect to disability within, and without, literature. It was also important to familiarise myself with work of academics such as Rosemarie Garland Thompson , Rod Michalko, Paul K. Longmore, Georgina Kleege and David Bolt, amongst others who have analysed representations of disability in art, literature and film. I had to become more informed about both the definitions of ‘disability’ and the various models of disability, historical and contemporary. These are cogently analysed in the article ‘Disability, Definitions, Models, Experience’ by Wassermann et al. which states:

The medical model understands a disability as a physical or mental impairment of the individual and its personal and social consequences. It regards the limitations faced by people with disabilities as resulting primarily, or solely, from their impairments. In contrast, the social model understands disability as a relation between an individual and her social environment: the exclusion of people with certain physical and mental characteristics from major domains of social life. Their exclusion is manifested not only in deliberate segregation, but in a built environment and organized social activity that preclude or restrict the participation of people seen or labelled as having disabilities.

In their extreme forms, the medical and social models serve to chart the space of possible relationships between impairment and limitation more than to reflect the actual views of individuals or institutions. (Wasserman et al., 2011: section 2)

I concluded from much of the literature I read and from academic commentary on the texts (Bolt; Garland Thompson,), that female disabled characters were vastly under-represented in literature. This helped me decide on the sex of my own protagonist. She must be female. Her disability? I decided to bestow on her the gift of blindness. Not complete blindness. She would see as I did, therefore she would have tunnel vision, and use a guide dog. This would ensure that I could get the essential detail of her disability right. Being visually impaired (VI) myself, I would be able to draw on my own physical and mental experiences and processes swiftly and accurately.

In this role of writer-practitioner and by using my own understanding of living day-to-day with a degenerating sight condition, I was not just thinking of gritty realism or authenticity per se. My protagonist would be authentically visually impaired, yes. But for a writer ‘authenticity’ is more nebulous as a concept.

As I grappled with this concept, I began to realise that the real impact on the novel from utilising my own direct experience is perhaps more to do with empowerment than authenticity. It can be seen as a reaction to my disability being ‘written about’ by others in the past who may, consciously or not, have exploited it in order to add significance to their own fiction. As the author and winner of the Pen/Bellweather Prize for socially engaged fiction, Susan Nussbaum, notes about her own beautifully crafted debut novel Good Kings, Bad Kings (2013), set in an institution for disabled teenagers in the USA:

None of those people writing books and movies that exploited their disabled characters as “symbols” were disabled themselves…They knew little if anything about the experiences of real disabled people. I knew the world, the jokes, the words, the underground details. I knew all three dimensions, not the tired one dimension they put out there for the public to eat I knew the struggles, the brutality of oppression, the love that held us together. I was the real thing, the authentic article. A genuine crip writer, writing about crips. (Nussbaum, 2013: 303)

I would emphasise that, although I have a visual impairment, I am not a ‘blind’ writer. Imagination has no physical impairment. I am a writer, full stop. The visual impairment gives me access to a different experience and different view-points that I can utilise to further my profession. In The Summer of Love I did want to work with a visually impaired character, partly to test my ability to channel my experiences and partly because visual impairment is a fact of life, like having green eyes or dark hair. It is not so exceptional and should not be treated as such.

However, in an ocular-centric world, blindness still evokes a certain ancient response, even in societies that purport to have an enhanced understanding of the human body and a more inclusive attitude.

It is relevant that my visual impairment, known as Retinitis Pigmentosa, was first diagnosed when I was 21 years old. At the time, I knew no one who was either similarly visually impaired or blind, apart from the occasional Zambian beggars of my childhood, who used to be led from door to door by young children asking for hand-outs, the objects of terrible pity. My response to the possibility of my own total sight loss (as can occur with this condition) was abject, unmitigated, fear. What had I learnt about blindness from literature? Visions of hell from The Day of the Triffids (Wyndham, 1979) and Blindness, (Saramago, 1997) cavorted with the gnarly one-eyed Fates of Greek mythology and filthy eye-patched pirates in Treasure Island (Stevenson, 1883). The blind were to be pitied or avoided, exploited or even hunted like animals. Many authors refused to even contemplate a normal life without sight. It’s better to be dead than blind, intimates Kipling in The Light That Failed (1891) and Conrad in The End of the Tether (1902), where, faced with the onset of blindness, their heroes commit suicide. My future as a globetrotting free spirit suddenly became untenable, unimaginable. When I thought of the blind community I would be joining, I imagined a line of groping, lurching, repulsive beggars, one behind the next, stumbling across my future landscape, and eventually I would have to grasp a shoulder and follow. No one would ever love me. I would end up in a dark corner weaving baskets, head shorn, a thing of pity and horror.

My ignorance of the reality of living with sight loss was hardly my fault given the circumstances. There were no obvious role models for someone with my condition and not even the opthalmologists could offer any encouragement. They often saw me as ‘a condition of the eye’ not as ‘a person’. Beyond the anatomy, physiology and diseases of the eye, they seemed uninterested in the daily life of their patients.

By 2012, however, I was over twenty years on from my original diagnosis and had enough experience of living with chronic sight loss to know a new literary model had to be written, a new paradigm sought. People are not defined by their condition. My VI protagonist would not be either.

I investigated further with help from Bolt’s book on The Metanarrative of Blindness: a Re-reading of Twentieth Century Anglophone Writing, in which he examines representations of blindness in more than forty literary works, including works by Kipling, Joyce, John Millington Synge, Orwell, H G Wells, Sontag and King, describing his work as shedding light on the deficiencies of these representations and sometimes revealing an uncomfortable resonance between these texts and the Anglo-American science of eugenics. (Bolt, 2013). This seemed appropriate given the issues of stigma, separation and potential euthanasia that I would be exploring in the novel manuscript.

His analysis led me to discover a remarkable absence of partially sighted characters in literature and on film. People are either ‘blind’ or ‘sighted’. They may ‘go blind’ and therefore experience vision impairment on their journey, but there are very few people represented with a chronic condition, stable or not. According to the Royal National Institute for the Blind (RNIB) website, of the two million people with severe sight impairment in UK, only about 4% are totally blind, and given that one in every nine people over 60 is living with sight loss, it occurred to me that this left a vast swathe of people unrepresented in fiction and film, myself included. This was a gap I determined to fill with my novel.

I did find some interesting representation of visual impairment when it came to memoir, both in films like Blue (Jarman, 1993) and Black Sun (Tan, 2005), and in autobiographical writing. There are many examples of excellent disability memoir, Christy Brown’s My Left Foot (1954) and Jean-Dominique Bauby’s The Diving Bell and the Butterfly (1997), to name but two. However, with regard to the experience specific to sight loss, and perhaps because I am searching for a deeper connection when reading these, I have found less well-rounded, less active and more passive writing. John Hull’s Touching The Rock (1990) was given to me by a friend when she heard that I might lose my sight. She said that the book had moved her greatly but personally I found it rather dull and depressing and quickly lost interest. I suspect that my friend had only glanced at it but presumed that I would find something more powerful within it due to my own circumstance. The book is about Hull’s journey to blindness and mixes memoir and flashback, dreams and contemplation, all weighted heavily towards the Christian ideals of ‘bearing up’ and ‘being one with Christ’.

If blindness is a gift, then death is a gift. What shall we give in return for our death? Whatever we are able to give it must be in anticipation for when we receive that final gift, we will have nothing left to give.

But if blindness is a gift and death is a gift, what have we to fear? If darkness is light, then light is darkness….The world, life or death, or the present or the future, all are ours, and we are Christ’s… (Hull, 1990: 108)

Need I go on? I strongly suspect that Touching The Rock is the kind of book given to people ‘like me’ i.e. people with a degenerating sight condition, by well-meaning ‘normal’ friends. This raises the question of who these memoirs are written for. Are they written to give non-disabled people an empathic experience of disability, or to give people becoming disabled a supporting shoulder squeeze? Are they written to shock or shake up the reader, or purely to reaffirm a status quo with a novel-length outpouring of depressing but possibly reassuring ‘coming to terms’ with being a ‘crip’? This confusion can be a problem for a reader, especially within memoir, when someone else’s experience, viewed through the lens of their personality, may irritate more than inform. Candia McWilliams, for instance, wrote her memoir What to Look for in Winter (2010) when she was blinded with blepharospasm, a condition which causes the eyelid to remain permanently shut. Her writing is sumptuous, lucid and poetic, but her all-consuming, self-pity renders her a lugubrious Eeyore:

That we each invent a world I do not deny…Mine feels unwhole to me at present, without sight and without a presence to give love to, through with many beloved absences, but I know that when I write fiction, I can make something external to myself that is whole. If one cannot daily build love, one must make something. I am digging a hole through the dark.

…and one of the reasons, I am sure, that I have been so imprisoned by my blindness is that I was my eyes, my eyes were how I got to being me. My eyes saw the edges of things and the insides of things and permitted me to write novels about these matters. My eyes gave me jokes that led me to friends who enjoyed my company. Without my eyes did I still believe? (McWilliams, 2010: 275-6)

There is a tendency for the ‘blind’ memoir to be either fraught with self-pity or, which in my opinion, is often as bad, plagued by the need to be seen as triumphing over tragedy, with the ‘kill or cure’ tropes of the disability literary canon casting oblique shadows. Helen Keller, Jacques Lusseyran, Jason Roberts and Ray Charles have all written memoirs about overcoming their ‘tragedy’ of sight loss to do extraordinary things against all the odds. They may still be disabled, blind ‘crips’, but they have almost purged themselves of their ‘otherness’ by their courage and spirit. How, in my own novel, and again referring to the original research enquiry, could I address the issues around living as a disabled person without falling into these traps?

I am grateful to Georgina Kleege who punched a hole in this concept of disabled hero as ‘symbol of human fortitude’ in her ingenious examination of Helen Keller’s life and work, Blind Rage: Letters to Helen Keller (2006). In the book, Kleege opens an intimate and lengthy imagined conversation with Keller through a series of letters asking, in fact demanding, that Keller come clean about how she had really felt and what she had really experienced. Kleege notes ‘It was as if her need to be an inspirational icon made it impossible for her ever to express any rage, fear or sorrow, even when her experiences would have prompted these emotions in anyone else. By turns, this baffled and infuriated me’ (Kleege, 2006: ix).

Reading Kleege, I get the sense that what starts in anger, in accusation, gradually mellows through the interrogation and the evocative and moving imagined re-enactments of events in Helen’s life, to a greater understanding:

The subject now is sex. Another aspect of the Helen Keller Myth is that you had no sex life. It’s a myth a lot of people work hard to preserve… They are such pains to promote the idea that you were innocent, pure, sexless. Why, Helen? Why is the idea of your sexuality so threatening? There are several answers. One comes from the impulse to make you a saint. Since blindness, deafness, and other impairments have traditionally been associated with sin, to make yourself admirable, you had to promote the notion of absolute purity. (Kleege, 2006: 45)

There’s more than one way to be a human being – that’s what you told the world. On the surface, it seems a pretty innocuous statement, but in fact it’s quite revolutionary. It forces people to question everything they take for granted as normal. It’s a message that needs to be spoken still. (Kleege, 2006:182)

This need for proof of self-worth has morphed into another cultural stereotype occasionally affixed to disabled people and often associated with the Paralympics, the ‘super crip’ or ‘super human’. And from ‘super crip’ it is not too big a step to ‘inspiration porn’, as nattily coined by the actor and journalist Stella Young. An example of this is the quote by Scott Hamilton, the figure skater and cancer survivor, ‘The only disability is a bad attitude’, which is often plastered over pictures of physically disabled people, usually children, doing ordinary things. As Young remarks:

Let me be clear about the intent of this inspiration porn; it’s there so that non-disabled people can put their worries into perspective. So they can go, “Oh well if that kid who doesn’t have any legs can smile while he’s having an awesome time, I should never, EVER feel bad about my life…”

In this way, these modified images exceptionalise and objectify those of us they claim to represent…it doesn’t matter what their names are, they’re just there as objects of inspiration. (Young, 2012)

Is it any wonder that so many of us who have a perceived disability struggle with understanding what is expected of us – should we hide or be heroes, be stoic or sob? Self-awareness and self-representation are surely integral issues for all of us, but how can disabled people approach our own stories when feeling constantly under scrutiny and held up to judgement? Kleege’s memoir, Sight Unseen, contains one answer as she takes ownership of her difference in a captivating, thought provoking song of self.

Others, I hope, will revive their image of blindness. And it’s about time. That image is older than Oedipus and could use a new coat of paint. This new image of blindness is blander and more mundane, a mere matter of seeking practical solutions to everyday inconveniences. It will force us to abandon the old clichés that equate blindness with ignorant despair and sight with virtuous wisdom. Surely it’s time for some new metaphors. . (Kleege, 1998: 227- 228)

I wanted my protagonist to be, like Kleege, fearless in her approach to this perceived vulnerability. I needed her to somehow stand for, and yet stand up for, all of us VI and blind women. I wanted my heroine, in the parlance of the American cinema, to ‘kick all kinds of ass’, but without having to don a mask and cape. To give her authenticity, she would have to have lived a life that toughened her up, that gave her insight and a certain body confidence. My heroine had to have more than attitude, she had to have experience of actual physical tangling, be it wrestling in bed or fighting out of it. She had to know what it felt like to hit someone hard as well as kiss someone hard.

By the second draft my protagonist had a name, Alexandra Lyon, no specified background, but named for lions and conquerors!

‘…I grow, I prosper:’ shouts Edmund in King Lear. ‘Now, gods stand up for bastards!’(Shakespeare, 1:3)

I knew this woman, Alex, would need a similar shout. ‘Now gods stand up for the disabled!’

References:

Bauby, J. (1997) The Diving Bell and the Butterfly. London: Fourth Estate.

Black Sun. (2006) {DVD} Director: Tam, G. Passion Pictures.

Blue. (1993) Director: Jarman, D. Channel 4 Films.

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Bolt, D. (2014) The Metanarrative of Blindness: a re-reading of twentieth-century anglophone writing. Michigan: University of Michigan Press.

Bolt, D., Rodas, J.M. and Donaldson, E.J. (2012) The Madwoman and the Blindman: Jane Eyre, discourse, disability. Columbus: The Ohio State University Press.

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Charles, R. (1979) Brother Ray: Ray Charles’ own story. London: Macdonald and Jane’s

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McWilliam, C. (2010) What To Look For In Winter: a memoir in blindness. London: Jonathan Cape

Michalko, R. (2002) The Difference That Disability Makes. Philadelphia: Temple University Press

Nussbaum, S. (2013) Good Kings Bad Kings. Chapel Hill: Algonquin Books of Chapel Hill

Saramago, J. (1997) Blindness: a novel. London: Harvill.

Shakespeare, W.(1994) King Lear. London: Wordsworth Classic Editions.

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