The University of Canberra required me to write more for my research proposal on representations of albinism than every other student researching every other topic. The Faculty of Art and Design Handbook says a proposal for a PhD should be 4,000 to 6,000 words. Mine is about 28,000 in full and, before UniCanberra suspended me for asking that staff not assault me again, my supervisors kept telling me to write more and more. They later expelled me for talking about being discriminated, assaulted etc, so my dream of a PhD is over. However, I intend to continue my research on this topic.

By posting this draft literature review here (I haven’t included the rest of my research proposal), I hope people will read it and give me feedback. Please. Copying across lost formatting so I’ve tried to fix it but if I’ve forgotten to indent a quote, please let me know and I’ll edit it.

Draft Literature Review regarding representations of albinism

This section of my research proposal will examine papers discussing representations of albinism in order to demonstrate that there is a gap in this field. Although the field is sparse, research into representations of albinism has been diverse, ranging from asking people with albinism what they think about representations to looking at representations directly. Some researchers have asked people with albinism what they think of representations of albinism across any medium and genre, finding that people with albinism believe representations of albinism in contemporary culture contribute to discrimination, thereby isolating them (Elkader, 2015; Green, 2017; Wan-Kee-Cheung, 2001). This researchdid not examine representations of albinism directly. Other researchers have examined representations of albinism in literature like TuSmith (1993), Robertson(2006, 2011)and Brayton (2011)and in movies like Miller (2017) and Reese (n.d.). Academics have argued that albinism is a cure for racism (TuSmith 1993) and that racism is the reason people with albinism have been marginalised (Miller 2017). ‘Disability as scapegoat’ tropes, including ‘albino as scapegoat’ have been identified (Hughes, 2015; Perks, 2003), which contrasts with Alumenda’s portrayal of albinism as a means to challenge beliefs and destigmatise (Chitando, 2008, 2014). Chitando’s (2008, 2014)discussion of destigmatising ‘outsider’ identities in African literature and Mswela’s (2013)discussion of the ‘evil albino’ trope being an impediment to equality are significant papers within this field although their discussions are focused on African literature and culture. Dunn’s (2015)research into high school literature featuring disabled characters shows that texts often use disability as metaphor, which is explored in class discussions, while disability issues are forgotten. None of the texts Dunn explores delves into albinism; very few texts used in classrooms have been analysed in an academic setting before; and of those — like To Kill A Mockingbird— disability issues tend to be set aside in favour of alternative discussion points.

Definitions relevant to this research

The medical model versus social model of disability

In 1960s Britain, a group of predominantly-male institutionalised physically-disabled people banded together to campaign for better living standards. They argued against the ‘medical model’ of disability — pigeonholing people based on a normal/abnormal dichotomy based on a medical diagnosis — and put forward the ‘social model’ of disability (Barnes & Mercer, 2010; Shakespeare, 2013; Snyder & Mitchell, 2006). This social model argues that the medical model’s definition of disability is impairment, while disabilityis the event of socially-imposed barriers to participation (Barnes & Mercer, 2010; Shakespeare, 2013; Snyder & Mitchell, 2006). Since then, many Western countries have legislated against disability discrimination although the effectiveness of this legislation is a matter of debate (Barnes & Mercer, 2010; Shakespeare, 2013; Snyder & Mitchell, 2006).

Since the advent of tertiary disability studies in the 1990s, there has been much discussion in academic circles about definitions of disability. The social model of disability served activists and advocates well and continues to do so but it was never intended to be a theory of disability. Increasingly scholars have turned away from a pure social model of disability because it does not allow for complexity of disabled experience. Dunn (2010)summarises the situation:

The new, interdisciplinary field of Disability Studies shows us how many disabling aspects of a person’s experience are constructed by society — by unnecessary barriers (Dunn 2010, p. 15)… If accessibility were more a part of our cultural consciousness, if inclusiveness were something we didn’t always have to be reminded about, if disability was seen as part of “normal” life, our buildings and classrooms would not need so much expensive retrofitting and people wouldn’t need to have to ask to notbe excluded (Dunn 2010, p. 16).

Thus, Dunn allows for disability to be constructed and imposed upon a person as well as allowing disability to be part of impairment, a flexibility not technically admissible in the pure social model of disability. The above quote emphasises the need for cultural consciousness and inclusion to embrace the needs of disabled people in a journal article aimed at teachers to help both teachers and students include those with disabilities to build a more participatory and democratic society.

Today theories of disability have developed far beyond the medical model and social models of disability to become as varied as flavours of ice cream. For example, Feely (2016)advocates Deleuzian ontology because discourse influences the material/experience and vice versa: politicians scapegoating people with disabilities as ‘frauds’ and ‘useless mouths’ builds resentment within communities, decreasing the likelihood of acceptance while increasing the likelihood of violence and other barriers to participation in society. More barriers to participation decreases employment opportunities, increasing the likelihood of being on social security thereby feeding discourse about people with disabilities being a drain on society.

On the other hand, Shakespeare and Watson (Shakespeare, 2006; Shakespeare & Watson, 2002)argue for a material embodiment of disability. This material embodiment is a significant shift away from any social model of disability, placing far more emphasis on individual experience of disability while not quite returning to the neoliberalist medical model of disability requiring people with disabilities to take responsibility for overcoming barriers to participation. There are many more variations in theories of disability but discussing these is not the purpose of this paper.

In short: the medical model of disability arose with the empowerment of the medical profession and modern ‘science’ drawing lines between ‘normal’ and abnormal. The social model of disability was intended not as an academic theory of disability but as a response to the medical model of disability, initiated by activists seeking to be de-institutionalised, seeking a living income and better living conditions. The social model of disability, with its separation of ‘impairment’ and socially-imposed ‘disability’ has served well as a platform for activists. However, the social model of disability is inadequate as a contemporary theory of disability, so academics — both disabled and nondisabled — have been engaging in discussions, thereby evolving many different theories of disability over the past nearly 30 years since disability studies was officially accepted as an academic pursuit.

Due to the complexity of the definitions of disability, this research will generally refer to ‘disability’ to include both impairment and barriers to participation except when impairment is the sole focus of discussion.

Ableism, racism, disablism and ‘normal’

Ableism is the expectation that, to fit in, everyone needs to be ‘able-bodied’ (Dunn, 2010, p. 17)while disablism is discrimination against people with disabilities. Racism is equated to ableism, particularly in light of the eugenics program that murdered over 240,000 disabled Germans as part of the Holocaust before Nazis started killing people who were not German (Snyder & Mitchell, 2006, pp. 124-126). Racism is often implicitly a form of white supremacy because

‘whiteness [i]s a raced category that is chromatically absent to Whites, an unexamined and unexplored normative backdrop’ (P. Smith, 2004).

White people do not recognise their assumption of normativity (P. Smith, 2004)on which their privilege is based, failing to acknowledge race in many ways (Moody 2008, p. 30; Dyer, 1997) including, for example, racially profiling likelihood of disease. Puerto Ricans are deemed to be more likely to have Hermansky-Pudlak Syndrome, therefore this condition is racialised. However, if a disease is a ‘white’ disease, it is not couched in terms of being endemic to those of white European ancestry because there is an assumption that being white is ‘normal’. Likewise, the majority white experience is defined as ‘normal’ because of assumptions of biological superiority (L. Davis, 2014; Snyder & Mitchell, 2006); this has led to ‘whiteness theory’ and also ‘normal theory’ (P. Smith, 2004).

Groch (1998) defines ableism “…as the belief in the natural physical and mental superiority of nondisabled people and the prejudice and discriminatory behaviour that arise as a result of this belief” (p. 151, cited in P. Smith, 2004). Like racism, ableism is also essentially ideological, rising from the same, mostly unexamined, “assumption of biological inferiority” (p. 202). It asserts that “people without disabilities are ‘normal’ and those with disabilities are somehow not equal” (Maluso 2001, cited in P. Smith, 2004).

Ableism is an ideological belief in the assumption of nondisabled experience as ‘normal’ and superior to disabled experience while active discrimination is disablism. Ableism is the disability equivalent of the gendered assumption that the male experience is normal and men are superior to women, while disablism is the gendered equivalent of misogyny (with apologies to non-binary persons).

The problem with normative ‘whiteness’ as the default identity is that ‘difference is othered’ (De Schauwer, Van De Putte, Claes, Verstichele, & Davies, 2016, p. 1098); when racial identities are ‘othered’ it is racism; when disabled identities are ‘othered’ it is disablism. ‘Disablism’ is defined as

a form of social oppression involving the social imposition of restrictions of activity on people with impairments and the socially engendered undermining of their psycho-emotional well-being (Thomas, 2007, p. 73, cited in Shakespeare, 2013).

Thus, disablism, a short term for ‘disability discrimination’ includes imposing barriers barring disabled people’s participation in society, social violence and social abuse (Reeve, 2003; Snyder & Mitchell, 2006, p. 8).

Cultural texts are a vehicle to exploring perceptions and beliefs about minority groups, particularly those held by cultural influencers who may not wish to publicly admit to beliefs that are revealed in their stories. Mohr (2008, p. 31)says that ‘the Othering process is used to define marginalized groups’; thus authors who may not wish to admit to prejudice publicly may have embedded their prejudice beliefs in their cultural texts via ‘othering’ or marginalising specific characters without analysing or challenging this process (Perks et al., 2008, p. 34). Likewise, high school teachers and students may uncritically accept established positions of disability; encouraging analysis of these traditions may challenge inherent assumptions.

In contrast to the ‘othering’ or marginalisation process, normative identity named in opposition to minorities is that of the ‘straight white male’. Disability is so little considered that it is not included in this dichotomy, which should read ‘straight white nondisabledmale’. With increasing awareness of age-related vision deterioration, even persons who comfortably claim the ‘straight white nondisabled male’ identity at the prime of their lives may well experience disability due to aging, as implied by the WHO statistic that

81% of people who are blind or have moderate or severe vision impairment are aged 50 years and above (WHO, 2017)

Based on WHO’s estimate that 253 million people were vision impaired in 2017, nearly 30% of the world’s population has vision impairment, most of which is disease or age-related (WHO, 2017). This is in comparison with the 1% of vision impaired people whose impairment is congenital or acquired as a child (Mariotti, 2012, p. 6). People with albinism make up approximately 0.00006% of the global population and 0.00003% of the US population. Estimates that Australia has 2000-3000 people with albinism is fairly consistent with US figures. This means that people with albinism are small minority: they are a portion of the 1% of the vision impaired population who were born with their vision impairments. As a minority, people with albinism are ‘othered’ and experience both ableism and disablism (Elkader, 2015; Wan-Kee-Cheung, 2001; Wan, 2003), partially due to their appearance and partially due to ocularcentrism and ocularnormativity.

Ocularcentrism and ocularnormativity

The dictionary defines ‘ocular’ as ‘being of or connected with the eyes or vision’ (Oxford Dictionary. Ocularcentrism, a term originally coined by David Bolt, is the assumption that ‘normative’ standards of vision are the default position, which leads to ‘blindness’ as metaphor for ignorance, lack of perception and poor judgement; e.g. this policy is based on willful blindness to economic reality(Oxford Dictionary). Bolt (2014, p. 14) says

If ocularcentrism is thought of as the baseline of assumptions, the very foundation of the metanarrative of blindness perhaps, then this neologism ocularnormativism denotes the effect: the perpetuation of the conclusion that the supreme means of perception is necessarily visual.

So ocularcentrism is to ocularnormativity what ableism is to disablism and assumptions of male superiority are to misogyny. An occularcentric and ocularnormative representation of a person with a vision impairment lacks authenticity.

Authenticity and realism

Stories that consciously feature disability and attempt to do so ‘benevolently’ are not authentic because of the pressures to comply with literary traditions, including having a ‘shape’ and an ending that is satisfying for audiences so as to sell cultural texts (Garden, 2010, pp. 122-123). Happy endings dominate books about chronic illness and disability, and autobiographies tend to conform to the ‘comic plot’ trope (Garden, 2010, p. 123). Peeling the Onion(Orr, 1997), a young adult story about acquired disability, does not have a happy ending, for which readers and reviewers have criticised it (Dunn, 2015 , pp. 85-117). When stories about disability and chronic illness defy expected norms like in Peeling the Onion, controversy erupts (Carey, 2013; R. Smith, 2013)although books like the controversial young adult novel The Fault in Our Starsare arguably more realistic than happy ending stories.

The tension between literary expectations, book sales and authenticity (Garden, 2010)is probably not more obvious than in the reception of Wendy Orr’s young adult novel, Peeling the Onion. Peeling the Onionis about a teenage girl whose neck is broken in a car accident, her life is turned upside down, she needs to grieve and cope with others’ reactions. Wendy Orr’s car was hit, causing an accident that broke Orr’s neck; she then went through a major change of lifestyle not dissimilar to that which her protagonist experiences. Her editor and others urged her to tone down the bleakness of the narrative when Orr felt she’d already toned it down as much as possible without losing authenticity (Haynes, 2016a, 2016b; Orr, 1997). Dunn’s analysis of Peeling the Onionand its reception reveals dissatisfaction with the bleak narrative and lack of a happy ending (Dunn, 2015).

The problem with most representations is that they are neither realistic nor authentic. For example: albinism causes vision impairment, and the degree of vision impairment varies according to the degree of albinism. The person whose albinism causes significantly paler-than-usual complexion for their ethnic heritage will have less vision than someone who can ‘pass’ as ‘normal’ (have sufficiently good eyesight to not need visual aids beyond perhaps corrective glasses). A person with violet or pink eyes will be legally blind. Thus, Silas in The Da Vinci Codeportrayed as a sharp shooter is unrealistic. People with albinism have said this portrayal is not authentic in that it does not portray the lived experience of people with albinism and reinforces prejudice (Houpt, 2006; Howland, 2006). People with disabilities seek personal representation and role models in cultural texts (Sancho, 2003).

Readers of illness and disability narratives who are looking to them for a cultural reflection of their own, sometimes isolating, experiences of disease or difference can be emotionally invested in the authenticity of these stories (Garden, 2010, p. 123)

While disabled readers seek a mirror and a companion, healthcare providers may consume these texts to learn about their patients’ experiences. People with albinism have expressed their concerns about not being represented authentically and the impact of negative representations like that of Silas.

However, there is a fine line between authenticity and authentocracy, which is

the insistence on, and the weaponised performance of, an “authentic” class identity. Inevitably, the main identity policed in this way is working-class. As part of this performance, authentocracy insists that a narrow conception of the working class as socially, culturally and economically conservative is the only authentic one (R. E. Jones, 2018).

Analysis of representations of disability risk falling into the ‘authentocracy’ category if the critic falls into the trap of a ‘single story’ of disability like a narrow conception of working class as ‘authentic’. In the case of albinism, this may mean failing to recognise the range of degrees of albinism while insisting on one experience as the ‘only authentic experience’. However, this research intends to exclude mild degrees of albinism where the person can ‘pass’ for ‘normal’ (thus they are nondisabled — meaning albinism’s effect on their vision is minimal — and they have an appropriate colouring for their ethnic grouping even if not for their family grouping). This research will focus on albinism where its effects cause difference of colour to the ethnic grouping and vision impairment that cannot be corrected and cannot ‘pass’ (that is, for example, the person/character has albinism to the extent that they either cannot drive legally or must use bioptic glasses [telescopes built into their glasses] to drive or their lack of pigment suggests that this should be the case).

It is difficult to convince nondisabled people that people with vision impairment, and particularly people with albinism, have a unique culture within their own society. However, people with albinism and people familiar with albinism can recognise people with albinism on sight (if their sight is sufficient). Different countries perceive disability in different ways: the USA tends to think of people with disabilities as a marginalised ethnic-cultural minority (Grue, 2016a), which is particularly appropriate for a group whose sense difference (vision impairment) has shaped a different way of perceiving the world. Without personal experience of this kind of difference, understanding requires critical engagement and, perhaps, guidance while unpacking points of difference and different experiences.

Representations of disability can lose authenticity when shaped for market consumption. When authors without experience of disability appropriate disability with insufficient research and without consulting experts (people with that disability), their representations tend to be more problematic. Even if intended to be ‘benevolent’, these representations are usually imbued with stereotypes and cultural assumptions. This is discussed in greater detail later in this literature review, particularly regarding Lionel Shriver’s claim that it is acceptable to use minority identities without research to intentionally ‘put one over on’ readers (Shriver, 2016).

Before delving into existing literature, I will explain albinism and hypopigmentation (‘hypo’ means ‘below normal’, so ‘hypopigmentation’ means ‘below normal [levels of] pigmentation’).

 

Figure 1: a normal human eyeball (Blaus, 2014)

Albinism and hypopigmentation

There are many types of albinism, from ocular albinism that only affects the eyes to oculocutaneous albinism that affects skin, hair and eyes to other types that affect the body more extensively so therefore limit life expectancy. Hypopigmentation, below normal pigmentation, is an effect of albinism and, alongside the ‘red eye’ trope, is often the only aspect of albinism used in fictional stories with characters who have albinism.

Seibert and Darling (2013, p. 92)define albinism as a

…disorder characterized by defects in the synthesis or transport of melanin [a form of pigmentation]. While relatively uncommon in the United States (1:37,000), albinism affects approximately 1 in 17,000 individuals worldwide… the amount of melanin the individual’s skin can produce [varies]… Melanin is critical for eye development and skin protection. When melanin is absent, or present in very low amounts, eye movements may be abnormal and visual acuity is often poor…

Melanin is a form of pigment. Pigment is an essential part of a ‘normal’ eyeball. People with albinism have less pigment in their eyeballs. This means that, depending on the degree of albinism, light can pass through the iris and even the whites of the eyes, which is like allowing light to come through the sides of a film camera: the image is confused. Likewise, with insufficient pigment in the lining of the eyeball, light bounces around inside the eyeball, thereby confusing images more.

The fovea (see above diagram) is the area in the eye that ‘normal’ people use for facial recognition and reading while the macula is the area used for peripheral vision. Depending on the degree of albinism, these areas may be underdeveloped (hypoplasia) or not developed at all. Sometimes albinism affects the optic nerve, which may cause deterioration of eyesight or blindness even though the degree of albinism may not be so significant that lack of pigment in the eyeball causes blindness. People with violet, pink or red eyes do not technically have pink or reddish eyes; their lack of pigment allows light to reflect through their iris making their irises appear red, not dissimilar to ‘redeye’ in photography. Siebert and Darling refer to eye movements; this can be due to insufficient eyesight and coping mechanisms but is also often due to nystagmus, a flickering of the eyes that develops when infants cannot focus on the world around them due to poor eyesight.

Many people diagnosed with albinism are legally blind, meaning they have less than 6/60 eyesight: this means that what a ‘normal’ person can read at 60 metres, a legally blind person’s ‘best corrected’ eyesight (while wearing glasses and in ideal lighting conditions), they can read at 6 metres.

A real-world example of albinism is that technically I’m not legally blind but I have macular hypoplasia, which means that my maculae (bit of the retina normally used for peripheral vision) is what I use for reading and facial recognition although even my maculae are under-developed. I also have transillumation of the iris (light passes through my pupils and irises), light bounces around my retinas, I have nystagmus (sideways flickering of the eyes, which reduces vision further) and, subsequently, a lot of floaters developed (lumps of jelly in the eyeball that cause shadows in my vision). Although my ophthalmologist says I am not legally blind, in some lighting conditions even with my glasses I can see very little, less than the maximum degree allowed for legal blindness.

Albinism causes variations in visual acuity depending on lighting conditions, fatigue and stress, and can also affect the ability to see colour. Thus, albinism alwaysaffects the ability to see, the degree of vision depending on the degree of albinism and the type of albinism as well as other factors like whether the optic nerve is affected.

Understanding albinism

One of the facets usually overlooked in research into representations of albinism is that ‘albino’ identity consists of a Venn diagram, with albinism overlapping with impairment and/or race. For some the condition is so mild they may only be slightly paler than average, with very mild photophobia and vision that can be corrected with glasses. This will inform my analysis in that representations selected for analysis will be located in the overlapping portions of the Venn diagram, those in the impairment/albinism, race/albinism or race/impairment/albinism spaces. The reason for this is that people in the ‘albinism only’ space are not easily identifiable as having albinism and the impact on their vision is so minor that glasses can rectify or mostly rectify their vision, thus they do not have such a stigmatised identity. These people can ‘pass’ for ‘normal’ with minimal or no effort. The exceptions to this rule are like Anthony Rapp who openly identifies as having albinism although his glasses rectify his vision; this case is relevant because he is cast in the role of a ‘pale’ character on Star Trek Discovery(Fuller & Kurtzman, 2017)where another character suffers stigma due to his albinism. Thus, an in-depth analysis of representation of albinism in Discoveryrequires acknowledgement of Rapp’s role, how his character compares and contrasts with the other ‘albino’ character, and how knowledge or lack thereof of Rapp’s albinism potentially affects viewers’ understanding of this cultural text, as well as broader discussion of how the character with albinism is positioned regarding race.

Most research into representations of albinism only acknowledges the visually distinct characteristic of unusually little pigmentation in the hair and skin and stigmatisation of the identity. Miller (2017) is one of the few Western researchers who acknowledges vision impairment as part of ‘whole package’ of albinism and yet she too focuses mostly on colouring not the disability component. This unique perspective is, as Miller acknowledges, due to her son having albinism and developing nystagmus (flickering of the eyes that develops due to poor eyesight). Miller does not focus on stigma due to vision impairment, which is probably a combination of the attention her son’s colouring receives (A. Jones, 2013; Miller, 2017)and due to his pre-school age at the time of writing her dissertation (A. Jones, 2013). Social problems in Africa due to rape, murder and human trafficking of people with albinism are so prevalent that there has been more of a focus on representations of albinism in popular culture, including in literature, the creation of an albinism-only football team and albinism-only beauty pageants, while in the West scholars argue for the ‘benefits’ of using albinism as a metaphor for nondisabled interests.

People with albinism have suffered and continue to suffer as a result of eugenics ideals and eugenics programs because of their vision impairments. These ideas have a firm foundation built on historical shifts of power caused by religions denouncing those who are different then the medical profession gaining power in the nineteenth century, resulting in defining boundaries between ‘normal’ and ‘abnormal’.

The birth of contemporary eugenics programs

Miller (2017, pp. 62-63) discusses the ‘ritualistic killing’ of characters with albinism in the Da Vinci Code, The Heat, Cold Mountain, and the Matrix Reloaded, which she says these stories justify by positioning albinism as a threat to normative whiteness and portraying PWA lives as worthless. ‘Normative whiteness’ is white European-descended identity, and thus includes white Australian, white American, white UK and white Canadian identities. In Miller’s analyses of the above movies and the fifth movie she analyses, Me Myself and Irene, Miller does not reference Darke’s (1998)normality drama, Bolt’s (2006)‘benevolent’ representations of blindness, Bolt’s (Bolt, 2008; d’Evie, 2017)work on ocularcentricsm, Mitchell & Snyder’s (2000, 2006) work on narrative prosthesis and eugenics, Quayson’s (2007)work on aesthetic nervousness nor TuSmith’s (1993)locating of albinism as a substitute for race and other scholars’ responses to this. This section will unpack the history of eugenics as it pertains to disability (including albinism) as a foundation for then discussing the above scholars’ works. This history explains current assumptions regarding the positioning of disability in society that can be critically analysed in high school English classes.

Prior to industrialisation in the nineteenth century, disability tended to be a private family affair. With the advent of industrialisation and increasing authority of medical doctors, definitions were imposed around what was deemed ‘normal’ and what was now defined as ‘disability’. Institutionalisation became more common, with a eugenics discourse allying with increased pressure on workers to produce, resulting in the vulnerable being segregated into asylums or sanatoriums. Disability was thought to be pervasive: if someone had a mental illness, that person was stripped naked by medical personnel in institutions and inspected for physical stigmata. Likewise, if someone had a physical disability, that person was thought to be mentally deficient in some way as well, and deemed unfit to be responsible for themselves (Barnes & Mercer, 2010; Mitchell & Snyder, 2000; Michael Oliver, 1996; Snyder & Mitchell, 2006).

US, UK and Canadian scientists taught Nazis about their eugenics programs then Nazis put those ideas into practice. Nazis systematically murdered institutionalised PWDs while developing their mass execution and body disposal techniques; they then transported this technology to concentration camps to be used on Jews, homosexuals and other ‘lesser people’ (Mitchell & Snyder, 2000; Snyder & Mitchell, 2006). After World War II, Western society reacted against the systemic murder of millions of people and legislated to prevent this happening again, but eugenics ideals concerning people with disabilities continued to pervade Western culture, with many people institutionalised (Mitchell & Snyder, 2000; Mike Oliver & Barnes, 2010; Snyder & Mitchell, 2006). There is little public awareness that the Nazi eugenics program started with disabled Germans although, with the rise of people’s movements to counter white nationalism, social media memes include references to Niemöller’s quote that ‘First they came for the socialists…’ (United States Holocaust Memorial Museum, n.d.).

Currently conservative politics is on a slippery slope to repeating history: GOP gubnatorial candidate Christopher Barnett recently used social media to advocate euthanising people with disabilities instead of giving them food stamps (The Damage Report, 2018). Between January 2016 and December 2017, three children aged 9, 11 and 17 were ‘euthanised’ in Belgium although there is no evidence that they were untreatable with death imminent. One woman with dementia was also killed at her family’s request without personally requesting euthanasia (Lane, 2018). In Australia, parents who have killed their disabled children have received public and legal sympathy, avoiding gaol sentences for murder (Wallace & Connor, 2014). Eugenics ideals are put into practice in society and in the courts. While fictional representations of albinism include ‘justified’ killing, the underlying eugenics and ableist/disableist ideology is rarely interrogated; Miller’s (2017)dissertation is a rare example.

Representations of albinism and race

Contemporary fiction, whether that be on screen or in print media, uses hypopigmentation to depict zombies, vampires and other supernatural creatures, thus cementing links between albinism and unnatural, even dangerous, creatures. This section looks at Miller (2017) and TuSmith’s (1993) analyses of albinism as well as the works of those who reference TuSmith. TuSmith’s primary goal is to discuss issues of race, which she seeks to subvert by substituting albinism. Miller examines representations and racialisation of albinism, using brief interrogation of five movies, a photo campaign and two TEDx talks to support her views. Miller discusses race in cultural texts and her personal experiences as the African American mother of a child with albinism but her descriptions can be misleading and her interrogation of the movies omits key issues, like how albinism is positioned in terms of race in one of the analysed texts, the movie Me, Myself and Irene, in a dissertation that focuses on racialisation of albinism. A comedic buddy cop movie, The Heat(2013), is the most recent movie Miller analysed, and The Matrix Reloaded(2003) is the only speculative fiction movie Miller analysed. Papers analysing I Am Legendare also incorporated into this section for their analysis of a movie that simultaneously explores and subverts racism by juxtaposing hypopigmented ‘dark seekers’ with the protagonist African American character played by Will Smith. There is very little literature that focuses on representations of albinism as the primary focus so I will include Chitando’s (2008, 2014) discussion of African literature aimed at child readers with an implicit goal of challenging social norms to destigmatise people with albinism.

The Inscrutable Albino

Bonnie TuSmith’s (1993) paper titled ‘The “Inscrutable Albino” in Contemporary Ethnic Literature’ is cited by others as an authoritative work justifying their own interpretations of albinism as a metaphor for race in literature (Handcock, 2013; Hoem, 2002; Probyn-Rapsey, 2007). Very little discussion can be found on the ‘inscrutable albino’ trope and no analysis of her stance with regards to its relevance to people with albinism. The discussion by those referencing TuSmith has focused on using albinism to interrogate and destigmatise normative racial representations in literature due to the dearth of papers specifically interrogating representations of albinism in literature and other media. TuSmith (1993, p. 85)says

When we assign the quality of inscrutability to Asians, we are viewing three-fifths of the world’s population as exotic and mysterious, less than “human”. When we attribute inscrutability to albinos, however, we tap a symbolic realm of color imagery which is beyond race. This opens up a new set of literary possibilities for ethnic writers who wish to explore how Americans who are marginalized by their racial color themselves perceive color.

TuSmith fails to identify the visual impairment aspect of albinism, focusing instead on albinism as a race rather than a disability issue. Handcock (2013) cites TuSmith uncritically, using her paper to support his discussion of H. G. Wells’s The Invisible Man, whose albinism was cited as the reason he could be made invisible:

Bonnie TuSmith observes that in contemporary literature human albinos are generally considered un-aesthetic, and writers who utilise albino imagery seem “to play off this anticipated response to defamiliarize the reading experience” of the body and skin, rendering them colourless, ambiguous texts (Handcock, 2013, p. 46).

Lack of normative levels of pigmentation in people is interpreted as creating a blank canvas that has been used in representations as a means of inserting an identity of choice or as a substitute for the less politically correct vilification of people of colour. Thus discourse reduces people with albinism to ‘things’, including mirrors and projection screens as in discussions of I Am Legend(Brayton, 2011; Roberts, 2016). This blank canvas trope is especially relevant to discussions of To Kill A Mockingbirdand All The Light We Cannot Seein Australian high school English classes.

The invisibility and subjugation of the disabled via storytelling is a trait explored by Mitchell and Snyder in Narrative Prosthesis(2000) in that disability is invisible in terms of real-world impact on disabled people and is instead used as a metaphor to explore the interests of audiences who do not share that disability. In contrast, stigmatised identities can be used in literature and movies to challenge the stigmatisation of minority groups, to build respect and inclusion of diverse identities. For example, Alumenda’s novels show characters with albinism as complex people, they explore stigmatisation and challenge normative assumptions about people with albinism in Africa, then these novels demonstrate destigmatising the characters (Chitando, 2008, 2014). This aspirational goal is complicated by research that shows ‘whiteness’ of African Americans with albinism can be perceived as a threat by whites, Africans and African Americans(Green, 2017). Before attempting to use albinism as a ‘cure’ for racism it is necessary to investigate racialisation and other forms of colourism alongside stigmatisation.

Hoem (2002, p. 207)and Probyn-Rapsey (2007, p. 161) quote TuSmith uncritically, for example:

Bonnie Tu Smith argues that the figure of the albino functions as a form of racial “disorientation” and that “ethnic writers like Wideman seem well aware of the benefits of such inescapable regrouping” (Probyn-Rapsey, 2007, p. 161).

This regrouping or redefining of race via whiter whiteness may seem to benefit some. The problem is that, as Robertson (2006) points out, people with albinism already have a stigmatised identity, they are already ‘othered’, then writers use albinism as a trope to advocate for racial equity, which has the inadvertent consequence of reinforcing the outsider status and perceptions of threat caused by albinism.

TuSmith refers to the ‘albino in each of us’ as if it is an alternative identity or persona, and advocates using albinism as if it is another archetype or trope instead of a political term like ‘nigger’ but for hypopigmented people. According to TuSmith (1993, p. 99), use of the ‘albino image’

affords depths and nuances — moments of self-examination and transcendent insight — which the “dual personality” tag of (white) American versus (black) ethnic has not been able to accommodate… the albino in these works is …a literary trope which questions our assumptions and perceptions; it serves as a window through which we — people of all colours — can begin to decolonise our minds… The albino in each of us can be a true source of liberation.

TuSmith wants to use the identity of an already marginalised group, people with albinism, to stand in for other racial identities without considering the consequences. When Meryl Streep said ‘We’re all Africans’, people were outraged that she claimed the identity of a disenfranchised minority in America (Vlessing, 2016), and yet TuSmith escapes criticism when claiming the even more disenfranchised and marginalised identity of a group of people with disabilities when she says ‘the albino in each of us’. Furthermore, TuSmith has failed to consider ‘white’ fear of ‘black’ people with albinism that is has been documented in some research in the West but more so in Africa (Green, 2017; Robertson, 2006). Using albinism as a trope to explore issues of race may help people of colour in their quest for equity but the ‘albino trope’ continues to marginalise people with albinism.

The use of albinism as a literary trope is symptomatic of the hierarchical habit of ‘kicking the cat’ where feminists historically argued that they were not coloured nor disabled so they deserved equality with men and people of colour argued that they were not disabled so they deserved equality (Snyder & Mitchell, 2006, p. 13).

Of the authors who have considered the use of the term ‘albino’ and the literary meanings, Miller and Robertson have delved most deeply, both discussing the inferior or subhuman status assigned to people with albinism. Robertson (2006, p. 19)discusses TuSmith’s paper: ‘By positioning the albinic body as the a priori condition of the human condition’ it is possible to ‘denaturalize the racial inferiority of blackness and discredit the notion of white superiority’ (Robertson, 2011, p. 1).  Miller (2017, pp. 111-112) says:

Then and now, the term [albino] steals the albinic individual’s association with a community. Moreover, inferiority is embedded within the word, and it may become the totality of existence and representation of PWA in the general public. Therefore… Western ideas about albinism impac[t] PWA and their articulation of self-identity.

It seems Miller is using TuSmith’s paper to support her own where convenient without acknowledging the conflict: Miller argues that PWAs need to be ‘un-othered’ while TuSmith argues that assigning people with albinism a ‘less human’ identity is acceptable to facilitate exploration of issues of racial identity. This research will explore this feature of literature and literary studies, particularly in relation to To Kill A Mockingbirdand All The Light We Cannot See.

Normative whiteness vs extreme whiteness

Brayton (2011)and Roberts (2016)discuss I Am Legend (Lawrence, 2007), a post-apocalyptic dystopian movie that celebrates neoliberalist ideals including consumerism while implicitly exploring racial issues in a post–Hurricane Katrina society. I Am Legendpositions hypopigmented (albino) humans as antagonistswhile privileging normative whiteness and misrepresenting or ignoring features consistent with albinism, like grossly exaggerating people with albinism’s sun sensitivity. When in sunlight the ‘dark seekers’ (the characters with albinism) burn as if in contact with a hot stove then quickly die; this is a misrepresentation of genuine sun sensitivitybut it is consistent with many other representations of hypopigmentation, reinforcing tropes regarding transgression and deviance (Mitchell & Snyder, 2000, p. 8). No other issues like vision impairment are evident in the story. Brayton (2011)discusses race and consumerism in Legendwhile making the same omission.

After Katrina, normatively white leaders and celebrity volunteers dominated the news. In contrast, Legendprivileges Robert Neville, played by African American Will Smith while exploring governmental responsibility in disaster like that during and after Hurricane Katrina in 2005 where the government allegedly opened flood gates, flooding poor areas and causing deaths, in order to protect wealthy neighbourhoods from flood damage. Legendshows government agents killing innocents and bombing bridges, transforming a disaster into a catastrophe. The ‘looming presence of “white terror”, and black heroism… are structured around the slippery racial symbolism of the “dark seekers”…’ (Brayton, 2011, p. 71).

[T]he black scientist [is positioned] as an aspiring humanitarian and the “dark seekers” [hypopigmented people who avoid the sun] as symbolic racists who are capable of reform… Legend… can be critically appropriated as a fable of racial discord… (Brayton, 2011, p. 70).

Thus, Brayton points out that Legendpositions hypopigmented people as contagious, a threat to society and a threat to the survival of the human race. Hypopigmented people are positioned as less than human, without intelligence, until late in the movie where the hero realises they have communities, loved ones and can communicate — shortly before they kill him.

Both I Am Legend and Brayton’s paper fail to acknowledge people with albinism, preferring not to engage with issues around authentic representation. It can be argued that this is acceptable because the movie is not attempting to authentically represent albinism. However, consistent misrepresentations reduce the reality of lived experience to tropes while supporting the ongoing sequestering, exclusion, exploitation and obliteration of people with albinism ‘on the very basis of which [these] literary representation[s] so often rest’ (Mitchell & Snyder 2000, p. 8).

Roberts (2016, pp. 49-50)cites Brayton but argues that Neville plays the role of African American patriot to reassure audiences in a post–9/11 world, and does not otherwise mention racial politics internal to America:

Dark Seekers can be viewed as symbols for evil, be they “an impediment to consumption or potential jihadists,” representatives of whichever national or political force is the American villain of choice… the political enemies a faceless national mass, opposed to the valued American ideology, embodied by Neville (Brayton, 2011; cited in Roberts, 2016, p. 48).

Thus, Roberts, like Handcock (2013)and TuSmith (1993), reads hypopigmented people as a ‘blank canvas’ upon which authors and audiences can inscribe what they wish. Perks (2003)observes that extreme whiteness serves to exculpate normative whites from atrocities like the actions of Nazi Germany in World War II by linking albinism to Nazism via, for example, characters with albinism Silas and imagery used in the Da Vinci Code(Howard, 2006), and Washington in Nazis-on-the-moon movie Iron Sky(Vuorensola, 2012). This plays out in Legendwhen extra-normative whites, the ‘dark seekers’, threaten humanity and the protagonist. Legend’s cinematic conclusion (there is an alternative ending available) reinvests in a neoconservative nostalgic version of pastoral Christianity in a gated community; this community has a hope of curing the virus causing extreme whiteness and causing these ‘victims’ to be aggressive (Brayton, 2011, p. 74).

Black vs white

When delving into albinism as a primary issue, Miller (2017)briefly analyses five cultural texts, two TEDx talks and a photo campaign by an activist group advocating for people with albinism in order to expose cultural beliefs about albinism. The five cultural texts are The Heat(Feig, 2013),The Da Vinci Code(Howard, 2006),Cold Mountain(Minghella, 2003), The Matrix Reloaded(Wachowski & Wachowski, 2003)and Me, Myself and Irene(Farrelly & Farrelly, 2000)as well as two TEDx talks by African American models with albinism Shaun Ross (2014)and Diandra Forrest (2015). Miller’s analysis is limited but she furthers a little-researched field.

In her abstract, Miller (2017, p. ii)says

By examining the complexities that arise when albinism is communicated about in the general public, we gain more insight into the understanding of race in our culture.

Despite Miller’s claim to be unpacking issues of race via albinism, the movies Miller selected for analysis have a majority normative ‘white’ cast, including the characters with albinism who are played by normative Caucasian men. Me, Myself and Irene(Farrelly & Farrelly, 2000)is a notable aberration in this list: although it has a majority white cast, it interrogates race by positioning three African American men as the sons of a white American plus the character with albinism is played by an actor with albinism wearing bioptic glasses (a form of disability access). Unfortunately, the nature of Miller’s analysis of Me, Myself andIreneis very brief and focused on names given to the character with albinism while overlooking the racial dynamics and overlooking plot developments that result in the character with albinism saving the protagonist’s life. Nor does Miller discuss the protagonist and his family accepting the character with albinism at the end of the movie: he is positioned alongside the sons, potentially rendered as a fourth son. Thus, the main character has three African American sons and one hypopigmented son. Miller claims to explore albinism in relation to race but misses these developments in her analysis and the other selected movies do not incorporate both albinism and issues of race. Instead, Miller focuses on the most obvious issues like how most of these movies kill off the character with albinism while positioning these deaths as justified and not regrettable.

The two TEDx speakers Miller selected — Shaun Ross and Diandra Forrest — are famous models, so do not represent the ‘average’ person with albinism nor do they represent the ‘average’ African American with albinism. Most people with albinism do not become rich and famous so do not have equal potential to become ‘inspiration porn’. Furthermore, both Shaun Ross and Diandra Forrest talk about difficult times where their stigmatised identities as ‘black’ people with albinism caused them distress and trauma.

Miller (2017, pp. 145-146)says that the African American Muse brothers

were a captivating [freak show] attraction because of their hair and pale skin and sensitivity to light. The brothers lured and repelled Whites who were uncomfortable with the idea of light-skinned Blacks who might pass for White (Baker, 2016, cited in Miller 2017, pp. 145-146).

Today, the contemporary albinic body is capable of emancipating itself from oppression and fetishized attention… (Miller 2017, p. 146)

Citing these freak show attractions then claiming people with albinism are capable of emancipating themselves — a neoliberal ideal that places responsibility on the individual who may be powerless — overlooks the fact that both Ross and Forrest have been fetishized by being turned into models because of their stigmatised identities.

Miller denounces movies for their portrayals of albinism that justify killing people with albinism then she claims that present-day people with albinism are free and empowered to inscribe their own identities. This attributes power to the ‘average’ individual with albinism without interrogating the power of the dominant discourse to inscribe identity on individuals, conveniently forgetting that the majority of movies she analysed are reinforcing stigmatisation of people with albinism and justifying violence towards people with albinism.

Some researchers have consulted people with albinism about their sense of identity and the impact of cultural texts on their lives.

Albinism as a stigmatised identity

Green (2017), Elkader (2015)and Wan’s (2003)surveys and interviews of people with albinism dispute Miller’s assumptions regarding power to assert one’s identity. Green (2017, p. 17)interviewed African Americans who have felt stigmatised by and even rejected by their own ethnic group, including one African American with albinism who dissociated herself from her own people, preferring to identify as Hispanic because she found the Spanish community more accepting of her difference. Other researchers have found that the dominant discourse influences identity formation (Gaertner, Dovidio, Anastasio, Bachman, & Rust, 1993; Goffman, 1963; Myers, 2012; Sancho, 2003; White, 1990).

According to Sontag (Sontag 1978, cited in Mswela, 2013),

It has been a convention of all literature and art that physical deformity, chronic illness, or any visible defect symbolizes an evil and malevolent nature and monstrous behaviour (Sontag, 1978)

Thus, myths about albinos being evil etcetera are so pervasive and long-term that they tend to be considered a reflection of reality. The problem is those myths are quite extensive, not ‘just’ limited to being evil.

Robert Lima, professor emeritus of Spanish and comparative literature at Penn State, in his recent book, Stages of Evil, traces the history of occultism in theater and drama. “Since albinos are deprived of normal skin and hair pigmentation and their eyes feature blue or pink irises,” Lima says, “it’s easy to understand how supernatural connotations have attached to them.” For instance, he says, an albino resembles a vampire “in that both have the paleness of death,” and a werewolf, which shares “the fiery-red pupils that menace potential victims in the dark of the night.”

In The Da Vinci Code, Lima sees references to yet another familiar horror type, the zombie, “since its features and single-mindedness are close to those of Silas.” Though he claims that “The Da Vinci Code doesn’t play upon these associations,” he says that the resemblance to the ‘walking dead’ is evident. “It’s understandable how such qualities of Silas can lead to a potential albino-vampire relationship” (Clark, 2006).

Lima’s comments to Clark demonstrate his awareness of the use of hypopigmentation to portray ‘other’, especially a threatening ‘other’, drawing connections between albinism and various types of villain.

Due to the scarcity of literature concerning representations of albinism, I refer to a dermatologists’ paper about the use of dermatological skin conditions to represent evil in movies. These researchers found that

Classic film villains display a statistically significant higher incidence of dermatologic findings than heroes… Rooted richly in culture, art, and early film history, these dermatologic findings are used primarily to elucidate the dichotomy of good and evil through visual representation and may foster a tendency toward prejudice in our society directed at those with skin disease (Croley, Reese, & Wagner, 2017, p. E6).

In other words, characters with albinism are more likely to be villains than heroes, and these representations may increase prejudice. Perks(2003, p. 71)  claims that the percentage of movies with characters with albinism exceeds the percentage of the population with albinism but she does not cite movie release figures to justify this claim, which makes her claim dubious. Mike McGowan (NOAH president, cited in Perks, 2003, p. 72)said ‘there have been 68 films since 1960 that include an evil albino’ without listing the movies and without mentioning if there are any movies with other representations of albinism.

Filmmakers tend to use visual symbolism to emphasise character, thus reinforcing discourse connecting appearance to internal character, where beauty equates to goodness and ‘disfigurement’ or ‘flawed’ appearance equates to flawed character (Hall et al., 2013; Snyder & Mitchell, 2006). Sancho (2003), Hall et al. (2013), and Perks (2003)acknowledge that trends in representation of disabled minorities ‘may cultivate discrimination’ because people learn about the world from media portrayals. As stated earlier when discussing the Venn diagram of albinism, this research focuses on albinism that overlaps with impairment so significant it is categorised as a disability and with hypopigmentation so severe as to differentiate the person with albinism from their racial group. Perks also notes

the consistent correlation of skin color with morality [that] may have more severe consequences for collective society… The formal foundation of racism and colonialism is not necessarily based on physical features but on the way difference is discursively manipulated. Opposites, negations, and discursive polarizations harness rhetorical power (Perks, 2003, p. 74).

Thus, it is not albinism that causes stigmatisation but it is the construction of albinism as ‘other’ due to hypopigmentation inconsistent with one’s people group. It is not vision impairment resulting from albinism that is the problem but it is the way vision impairment is represented and positioned in discourse. Racist stereotypes have been increasingly criticised in recent years, but ‘the negativity of albino portrayals has been largely ignored by communication scholars’ (Perks, 2003, p.75). Most characters with albinism appear to be ‘European American’.

Super-whiteness

Vilifying super-normative ‘whiteness’ is not a balancing of the scales but an ‘othering’ of extra-normative whiteness, the prevalence of outcasts, the trend of not naming characters with albinism, and the trend of using characters’ appearance — e.g. ‘Whitey’ — as a substitute for a name (Perks, 2003, pp. 75-77). Croley et al’s paper cites Me, Myself and Ireneas an example of a villainous character with albinism who also has a ‘silly nickname’ (Croley et al., 2017, p. E4). Actor with albinism Michael Bowman’s character has both a symbolic name and nickname in this movie: his name is ‘Casper’, referencing comic and movie character Casper the Ghost, and his nickname is ‘Whitey’. Despite Croley et al.’s inclusion of Casper/Whitey in their list of villains, he saves the hero’s life before joining his family in several brief scenes at the end of the movie. Thus, Me, Myself and Irenedeserves more detailed analysis, as is discussed in relation to Miller’s dissertation.

According to Perks (2003, pp. 77-82), benefits to normative ‘whites’, supporting cultural norms and the dominant discourse, are derived not

from exploiting or subjugating actual albinos but, instead… empower[ing] normative whites through their differentiation from “evil” extreme whites, who then become vessels of guilt and sin.

Thus people with albinism are scapegoated for Nazi atrocities in The Da Vinci Codeto support American moral superiority on the basis of Nazi crimes of oppression being greater than American oppressions (Howard, 2006; Perks, 2003, pp. 77–82). Perks only delves into The Da Vinci Codein depth, merely citing other cultural texts to support her claims, without discussing the unrealistic representation of albinism in portraying a red-eyed character with albinism as a sharp shooter, although McDonnell (2012)says ‘ophthalmologists know that the depiction of albinos as gun-toting assassins is ironic…’ and Hurley (Howland, 2006)mocks Silas in a spoof of the Da Vinci Code. Perks’s omission illustrates a gap in research created by nondisabled researchers’ insufficient understanding of albinism.

The ‘evil albino’ stereotype is an impediment to equality

Mswela (2013, p. 79)goes further, stating that the ‘evil albino’ stereotype is ‘an impediment to equality’ because it ‘stimulates social intolerance and discrimination’ against PWAs. Consistently or mostly negative portrayals of people with albinism have repercussions:

According to Oliver, “To portray any group as one-dimensional is a problematic thing. Even if negative portrayals are infrequent, if it’s the case that every time albinos are depicted, it’s negatively, then the images become connected. Demonization of any group,” she adds, “runs the risk of affecting us in ways we might not be aware of”(Clark, 2006).

Professor Oliver argues for more balance in representations overall, pointing out the risk of uncritical absorption of consistently skewed representations of albinism. Furthermore,

Some speculation is in order on the effect of negative stereotyping on the disabled themselves, especially children with disabilities. “Self-identity is formed by what is communicated through the media as well as by interpersonal acts” (Gumpert & Cathcart, 1982, p. 13). To see oneself labelled and cast always in the role of the villain, helpless dependent or victim is not an enviable fate (Dahl, 1993).

An identity of self is heavily influenced by the stories others tell about us (White, 1990), including fictional stories told in various media (Goffman, 1963; Joubert, 2013; Markotic, 2008; Myers, Looper, Rendon, Sharp, & Graduate Advisor, 2012). Sancho (2003) and Lockyer (2015)agree with the above about the influence media, even fictional television programs, has on the dominant discourse in perpetuating discrimination. These stories may even incite violence against people with disabilities. One way to counteract portrayals of ‘evil albinos’ and ‘benevolent’ (stereotypical and unhelpful) portrayals is to balance them with nuanced portrayals that educate while entertaining audiences and offering role models to people with albinism. Another way of challenging portrayals that detrimentally impact identity is to challenge them in classroom discussions, teaching the next generation to consider others as they would like to be considered.

Destigmatising albinism

Chitando (Chitando, 2008, 2014)discusses novels featuring characters with albinism written by Zimbabwean authors Alumenda and Hanson: Anani the Albino Boy(Alumenda, 2002), Street Life(Alumenda, 1999)and Takadini(Hanson, 1997). Each novel focuses on the need to accept characters with albinism while exposing how people with albinism suffer from marginalisation. Chitando (2014)notes that ‘the story of Anani provides a significant literary breakthrough on a rather under-explored theme that has suffered scholarly neglect’. I aim to explore these themes concerning albinism.

Young Adult literature authors Alumenda and Hanson have been shown to undermine the dominant African discourse on albinism:

[The authors] encourage children to shun discrimination and embrace those among them with albinism. The authors call upon society to re-examine the myths that underlie prejudice against children with albinism (Chitando, 2008).

Conflict management, ability to dialogue, and tolerance are virtues Chitando advocates in children’s literature as a resource to develop a future generation of peacekeepers based on flexibility, respect and integrity (Chitando, 2008). These are attitudes that contribute to building a more inclusive society, as Chitando says:

Literature that examines the plight of children with disabilities, albinism and other conditions that make them different prepares children to respect the rights and feelings of others. This is a form of conflict management training as it allows children to notice that people are not the same… Children’s literature therefore is an important resource in training children in the values of dialogue and tolerance. Joseph Huber (1984)has provided a useful description of tolerance. He writes: “The improvement of individual and social living is brought about by tolerance. It means an understanding attitude and fair treatment of others…” (Chitando, 2008).

Chitando’s arguments regarding modelling dialogue, inclusion and respect modelled to equip readers for the future apply equally to Western cultural texts. Edgar says that ‘television can have a positive role to play’ in developing ‘children’s social wellbeing, [including] their emotional and moral intelligences’ (Hargrave & Livingstone, 2009, p. 55). Disabled people look for role models in television programs; the same programs can also destigmatise disability through familiarity and complex representation (Müller et al., 2012; Sancho, 2003). Disabled students may be participants in Australian high school English classes so they may see themselves in prescribed texts or they may see rejection of themselves. Class exploration of disability issues may have an immediate impact on inclusion as well as long-term consequences.

Cultural work

Representations of disability perform ‘cultural work’, elucidating and reinforcing cultural beliefs. According to Patricia Dunn (2015, p. 9), ‘every literary text does cultural work, for good or for ill, regardless of its perceived quality or its author’s intention’. To examine the ‘cultural work’, it’s necessary to determine ‘[w]hat is privileged’, ‘who gains and who loses’ and how disability is represented in these texts. Baskin and Harris (1984, p. 49) argue that ‘books are among the most potent tools available for promoting attitudinal change’. However,

The mass media has linked ugliness and disabilities with evil and violence for a very long time… Television can either perpetrate these stereotypes or promote more positive images of people who have disabilities (Biklen, Bogdan and Blatt 1977, p. 3)

It is not just literature and television that contributes to positioning disabled people; every cultural text in every medium does cultural work regarding disability either by how disability is represented or by disabled people’s absence. Analysing cultural texts can reveal the cultural work and whether the texts instil prejudice or promote inclusion, which is similar to part of Sancho’s (2003) research. Thus, the cultural work of a text may reinforce eugenics ideals via prejudice and justification of violence against people with albinism, as Miller (2017) discusses (see below). Alternatively, the cultural work of a text may educate audiences and promote inclusion, as in some of the examples Sancho (2003) discusses (see below).

Much of the cultural work of representations of disability is disabling towards people with disabilities. Patricia Dunn used the title Disabling Characters(Dunn, 2015)as an intentional pun: she recognises the disabling power of representations of disability and she wishes to disable these disabling characters to help build a more inclusive society. Even people with disabilities can be disabled by these representations: they can absorb the disabling metanarratives about their own disabilities thus being disabled by the rhetoric(Bolt, 2014b). Disabled people can also be prejudiced against other disabled people to the point of resisting the idea of removing barriers to others’ participation (Hickey-Moody & Wood, 2008). Sancho (2003) discusses the need for representations of disability that promote inclusion and tolerance as well as providing positive role models for people with disabilities as part of the cultural work of television programs across fiction and nonfiction programming.

One example of a cultural text that does disability-theory related cultural work is Finding Nemo, however, most children who watch this movie don’t fully grasp the extent of the disability theory embedded in the movie (Preston, 2010). As high school students, revisiting this cultural text with guided class discussions can introduce students to disability theory.  Preston (2010, pp. 58-59)lists example questions and an in-depth research project for high school students to this effect while Dunn (2015)delves more extensively into the topic by focusing on texts often used in classroom. Teachers and teaching materials tend to overlook the disability aspects of texts in classwork (Dunn, 2015). Dunn’s work contrasts with Preston’s because she exposes the ableist nature of many of these texts as well as the ableist attitudes involved in traditional teaching of those texts. Preston (2010) recommends

looking specifically at conditions or characters that help to establish a disabling environment for the other characters in these novels (p. 59)…

[because] movies, if framed by critical questions, become useful for all classrooms at all levels…It is the work of disability studies in part to question and change the representation of people with disabilities… The more enabling view of disability they get in our classrooms from a sophisticated critique of these cultural texts has the potential of transforming how people with disabilities are treated in the larger community (p. 60).

In essence, Preston recommends using cultural texts with which students are already familiar as subjects for classroom projects because familiar cultural texts enable a greater degree of learning when students are guided in critical analysis. Taking familiar cultural texts and exploring them in depth while encouraging curiosity can result in ‘lightbulb’ moments for individuals — both students and teachers — who will share their learnings resulting in cultural change (Dunn, 2015; Preston, 2010; Vidali, Price, & Lewiecki-Wilson, 2008). Teaching students disability theory as part of English studies is considered so important that, in 2013, theEnglish Journaldedicated a new regular column for this purpose (Dunn, 2013, p. 94).

The cultural work of texts to date that include disabilities tend to be overwhelmingly prejudiced, promoting images of people with disabilities as abnormal and as ‘deformed’ in character as they are in person. This cultural work has reinforced beliefs stigmatising people with disabilities.

From stigmatised identities to ‘benevolent’ representations of blindness

Eugenics ideals are promoted via stigmatising identities. Goffman defines stigma as ‘an attribute that is deeply discrediting’ and says the stigmatised person is reduced ‘from a whole and usual person to a tainted, discounted one’ (Goffman, 1963, p. 3)by others via social construction embedded in power relationships (Crocker, Major, & Steele, 1998, p. 505; Yang, Kleinman, Link, Phelan, & Good, 2007, pp. 1525-1526), including ‘a special kind of relationship between an attribute and a stereotype’ (Goffman, 1963, p. 4). Hall et al. (2013)expound on the impact of stereotypes, both deleterious and ‘benevolent’ stereotypes that still undermine authenticity in representations. Put very simply, people with more power can choose a point of difference or a point of difference is discursively built in to society a a way that stereotypes and stigmatises a person or people group with less power. Historically, this has been done to justify the slave trade and wars where the real cause of conflict is a desire for resources and power.

Anything that sets a person apart from those around them can be a source of stigma. For people with albinism, hats, sunglasses, prescription glasses, sunscreen, canes and service dogs are common; even sunscreen and long-sleeved clothing features large. People with albinism can feel stigmatised for points of difference from their need to protect themselves from the sun and bright lights to their need to use assistive devices in their daily lives. When others go for a casual lunchtime walk in the sun wearing short sleeves, people with albinism need to either hide from the sun or slather on sunscreen, wear long sleeves, hats and sunglasses. These differences can incite comment and even segregation. For example, a Canberra Timesarticle about Paralympian Chad Perris comments repeatedly on his use of sunscreen as a point of difference without mentioning that Perris’s reason for qualifying as a disabled athlete is that he is legally blind (Trask, 2017). ‘External objects such as assistive devices can become vestments of self-image for people with bodily impairments ([dis]abilities)’ (Anderson, Kaiser Gladwin, & Mayo, 2016, p. 1), so a cane, monocular (telescope for disability access) and style of dress can become part of a PWA’s self-image and have ‘a negative impact on one’s self-image’ (Anderson et al., 2016, p. 2). Likewise, students with albinism in the classroom may experience difficulties with participating in class activities as well as bullying or teasing between classes due to points of difference discursively positioned as assigning stigma.

Felt stigma is only part of the problem; social stigma attaches to points of difference. Garland-Thomson (2009)talks about the effects of staring, how staring embodies power relations and objectifies those who are stared at due to their stigmatised identities.

Staring is an ocular response to what we don’t expect to see. … Mike Ervin calls it “the car wreck phenomenon” (2005 interview) … So staring is an interrogative gesture that asks what’s going on and demands the story… (Garland-Thomson, 2009, p. 3).

Although a vision impaired person may or may not be able to see someone staring, other personal interactions send similar messages, effectively saying ‘you are a car wreck phenomena that we want to interrogate’. The Canberra Timesarticle about Chad Perris figuratively stares at Perris because of his colouring and use of sunscreen. In Me, Myself and Irene, the audience can stare at actor with albinism Michael Bowman’s bioptic glasses. Thus, movies as visual media provide an opportunity to stare without censure, as does the Canberra Timesarticle with its pictures and text. However, the stories created through these media may not promote an inclusive society (ibid, p. 9). Dunn (2015) suggests that cultural texts used in classrooms tend to position disability outside of the concerns of ‘normal’ people and/or the reception of these texts is such that classes avoid the difficult work of unpacking the texts in such a way as to challenge traditional ways of positioning disability.

Vision impaired people need technological accoutrements to assist in functioning in society. These accoutrements — disability access technology — effectively make vision impaired people cyborgs, whether the technology is a mobility cane, monocular, bioptic glasses, a desktop magnifier or any other form of disability access technology.

Cyborgs are monsters, or rather demonstrations, in the double sense of to show and to warn, of possible worlds (Wark, 2015).

Wark is saying that cyborgs are not recognised as human but are, instead, monsters. Researchershave asked people with albinism about their status to learn that PWAs consider themselves marginalised ‘others’ who believe that representations of albinism in popular culture have contributed to their marginalisation (Elkader, 2015; Green, 2017; Wan-Kee-Cheung, 2001; Wan, 2003).

Nuanced authentic representations like Bowman in Me, Myself and Irenecan educate the public and accustom audiences to difference (ibid, p. 9) as indicated in research about the effects of Harry Potter’s inclusion of various ‘outsider’ figures like Hermione (who has ‘muggle’ [non-magic] parents), Hagrid (who is half-giant and was used as a scapegoat then expelled from school), and Ron (whose family is poor) (Richmond, 2016; Vezzali, Stathij, Giovannini, Capozza, & Trifiletti, 2015). However, most fictional representations of albinism that come to mind — like To Kill A Mockingbirdand The Lion, the Witch and the Wardrobe— reinforce ‘otherness’ via the opportunity to stare and rarely include disability issues including access, thus omitting an important aspect of destigmatising albinism. Boo Radley from To Kill A Mockingbirdis positioned as a recluse outside of society, without interrogating the appropriateness of his outsider status. The White Witch in The Lion, the Witch and the Wardrobeis a hyper-white villain. Neither character appears to have a vision impairment so neither text explores issues of disability access. These texts situate pale people as outsiders. If people could figuratively stare during fictional representations and absorb a constructive authentic representation or learn to critically analyse traditional representations, this could equip them for personal interactions with PWAs instead of seeing an ableist or white-phobic fantasy, albinism and other forms of disability could be destigmatised (Garland-Thomson, 2009; Sancho, 2003).

‘Freaks’ depicted in visual media stories give permission to stare without censure, within a controlled environment free of censure (Garland-Thomson 2009, p. 19). Real-life comedian and public speaker David Roche uses staring to benevolently transform relationships including perceptions of visual difference by using his physical difference coupled with comedy to challenge assumptions (Garland-Thomson, 2006, pp. 181-184).

Actors with albinism add authenticity to representations of albinism. When their characters are accepted by others, likelihood of acceptance in the real world is increased (Garland-Thomson, 2009; Sancho, 2003). Stories portraying characters with disability demonstrating agency(having a degree of autonomy and influence on themselves and their environment) and being accepted by others with whom audiences can identify are important factors in increasing tolerance and understanding in audiences (Sancho, 2003). Research shows that exposure to disability via repeated viewings, permission to stare while subverting the staring event from freakshow performance to educative experience helps familiarise people with disability so they can learn from appropriatebehaviour modelling and having their assumptions challenged so they can accept previously ‘othered’ identities (Garland-Thomson, 2002, 2009; Müller et al., 2012; Sancho, 2003).

Normality drama

‘Normality drama’ is a label for stories that use disability to disrupt lives of nondisabled characters, concluding with the disabled person ceasing to disrupt the lives of normative people by either assimilating into society or being removed by death or geographic removal. Darke (1998)proposes ‘normality drama’, described as ‘a genre that uses abnormal/impaired characters to deal with a perceived threat to the dominant social hegemony of normality (Barnes & Mercer, 2010, p. 197).  Ellis & Goggin (2015, p. 28)cite Darke as a ‘pioneering figure in the study of cinema and disability’, noting that his papers are important. ‘Normality drama’ is closely associated with narrative prosthesis because, according to Mitchell & Snyder (2000), disability is used as a plot point to effect change for a nondisabled character. The difference is that normality drama is defined by the conclusion of the story including removing the disruptive effect of the disabled character, whether by the death, physical removal or assimilation of the disabled character. Assimilation is usually the disabled character’s responsibility, which is consistent with a neoliberal worldview. (Narrative prosthesis is discussed later.)  Darke cites Rain Man(Levinson, 1988)as an example: the character on the autism spectrum is released from an institution to create conflict to humanise the non-disabled main character then is returned to the institution ‘for his own good’.

Normality drama is one symptom of neoliberal and eugenics discourses where people with disabilities are required to assimilate into society without society making accommodations or else the disabled person is removed from society by death or institutionalisation. Miller (2017, pp. 62-63) discusses the ‘ritualistic killing’ of a character with albinism in the Da Vinci Code, The Heat, Cold Mountain, and the Matrix Reloaded, which is justified by albinism’s threat to normative whiteness and the perceived worthlessness of PWA lives. However, Miller does not reference Darke’s normality drama nor Mitchell & Snyder’s (2000, 2006) work on narrative prosthesis and eugenics as a significant cultural location of disability.

Whether a story finishes with the removal of conflict due to disability or not, disability is often portrayed as a tragedy or as ‘inspiration porn’ to motivate non-disabled people by highlighting their privilege.

Disability as tragedy or inspiration porn

Experience of disability is often portrayed as tragedy or, alternatively, the ‘brave’ disabled person is portrayed as ‘inspiration porn’ (Grue, 2016b; Vidali et al., 2008; Young, 2014). Locating disability with the individual consistent with the neoliberal worldview frames disability as personal tragedy and the disabled person as dependent (Brett, 2002, p. 829; Michael Oliver, 1996; Shakespeare, Watson, & Cunningham-Burley, 1999)instead of interdependent as people generally are (Bolt, 2014b). Disability-as-tragedy is a common trope (Barnes, 1992; Brett, 2002, p. 829; Darke, 1998; Shakespeare, 1994)although discussion about the meanings and implications have been limited (Brett, 2002, p. 829; Hevey, 1997).

Normative (nondisabled) assumptions reduce disability to deficit, assuming disabled people are abnormal and, thereby, excluded from a neoliberal ‘diverse’ society (L. Davis, 2014), therefore disability is rendered tragic. Bolt (2014b)points out that the phrase ‘there but for the grace of God go I’ is often said by nondisabled people and directed at people with disabilities, particularly regarding blindness. This directly impacts upon people with disabilities because they are considered inferior or subhuman as Robertson (2006, p. 51) asserts regarding people with albinism, regardless of whether people are aware of vision impairment as a feature of albinism. David Bolt (Bolt, 2008, 2014a)explores the prevalence of aspects of ‘tragic blindness’ including the figurative castration of the blindman in Jane Eyre, which leads to melancholia and feminisation (Bolt, 2008; Frawley, 2013; Kvistad, 2012).

Consistent with ableist views of disability, Bolt (2014b, p. 109)argues that most representations of blindness prioritise sight above all other senses. He uses Jane Eyreas an iconic exemplar of literature representing blindness:

the quasi lifespan of the blindman… [is represented via] alterity, … castration and … melancholia, revealing ocularcentric assumptions about beauty, sexuality and happiness respectively (Bolt, 2008, p. 270).

Bolt explores how the blind man has been ‘othered’, including discussing the trope of castration as metaphor for demoralisation, which leads to mourning and, thence, to melancholia (Bolt, 2008). It appears the blind character effectively has Stockholm Syndrome because he’s been held captive by a vision-obsessed society, causing him to internalise ocularcentric beliefs. The sighted author, unable to identify with the vision impaired, is writing from an ocularcentric point of view (Bolt, 2008)so characters with albinism are frequently portrayed without vision impairment.

‘Beneficial’ representations of blindness and vision impairment

Other aspects of discourse around blindness and music have been deeply impacted by casual links between musical ability, memory and blindness. Bolt (2006) discusses others’ statements about Ray Charles then says:

The problem with … such portrayals is that they situate achievement in a causal relationship with blindness, effectively removing the person from the equation. If left uncriticised, moreover, the fictional portrayals have a psychosocially damaging effect, for they inevitably influence attitudes towards the factual achievements of people with impaired vision… Also pertaining to employment, interpersonal relationships, creativity and so on, the perpetuation of beneficial blindness is degrading in all of its forms because it diminishes the efforts and achievements of people with impaired vision (Bolt 2006, p. 26).

These ‘beneficial’ representations are a means of objectifying people with vision impairment, reducing their success to a ‘thing’, an attribute or a ‘very minor superpower’ related to being disabled.

The point to emphasise is that the so-called Positive Stereotyping of People with Impaired Vision is no better than the overtly negative formation, for either way an object position is being defined, the subject position is necessarily held by someone with unimpaired vision. Indeed, beneficial blindness is only beneficial to prejudiced people who wish to maintain the binary logic of “the blind” and “the sighted”, them and us (Bolt 2006, p. 27).

‘Beneficial’ representations of vision impairment situate this disability as bestowing unusual gifts and abilities, thereby removing consideration of talent and effort that would be attributed to a nondisabled person. Many myths associated with vision impairment have become as common knowledge as the ‘fact’ that homo sapiens only use 10% of our brains; some of these myths are that vision impairment bestows improved eyesight, musical ability and memory.

There are several famous examples of blind musicians and even a few musicians with albinism, including Marvin “Krondon” Jones III, who also has an acting role in Black Lightning(2018). Discourse around blindness and music has been deeply impacted by casual links between musical ability, memory and blindness. Bolt (2006) discusses others’ statements about Ray Charles then says:

The problem with these and other such portrayals is that they situate achievement in a causal relationship with blindness, effectively removing the person from the equation. If left uncriticised, moreover, the fictional portrayals have a psychosocially damaging effect, for they inevitably influence attitudes towards the factual achievements of people with impaired vision. An English undergraduate with impaired vision, for example, might work hard on her or his essays and assignments, while struggling to overcome the multiple access problems that are faced during Higher Education (see Bolt 2004), only to be told ultimately that compensatory powers of concentration must have made her or his learning very easy. Also pertaining to employment, interpersonal relationships, creativity and so on, the perpetuation of beneficial blindness is degrading in all of its forms because it diminishes the efforts and achievements of people with impaired vision (Bolt 2006, p. 26).

Essentially Bolt is saying that although assumptions of inherent or compensatory giftedness of people with disabilities may superficially appear benevolent, they have a dual effect in disability discrimination. These ‘benevolent’ giftedness tropes reduce the person to a ‘thing’, removing recognition of giftedness and dedication that is ascribed to similarly gifted nondisabled individuals. These tropes also serve to mollify guilt of nondisabled people, to remove culpability for discrimination, discriminatory practices and barriers to participation in society.

Where characters have disabilities including vision impairment, storytellers’ assumptions about many aspects of their lives and personalities can be embedded in cultural texts. This includes assumptions about the sexuality of people with albinism and vision impairment.

Sexualisation and castration of the vision impaired and PWAs

Homo Sapiens are sexual beings. Romance is the best-selling genre and is part of many Australian high school English texts. To be ‘asexual’ is to be a minority so small that the ‘A’ in LGBTQIA tends to be omitted. Sexuality is important in contemporary discourse, which makes sexuality or omission of mention of sexuality of characters with albinism an important point of discussion. Research into representations of disability reveals that people with disabilities tend to be portrayed as either sexual monsters or asexual, with specific tropes concerning the sexuality of people with blindness and vision impairment. Kuppers (2004, p.16)argues that disabled bodies tend to be feminised in representations. Bolt (2005a, 2014b)agrees but also argues that disabled people/men are literally or psychically castrated in representations. This research will explore sexuality in texts as this is a significant issue for adolescents’ personal development and the positioning of disabled people in society.

Sexualisation or asexual portrayals of vision impaired and/or hypopigmented characters is an important aspect of representation that has been overlooked when researching representations of albinism. Although Kvistad (2012, pp. 64-65)agrees with Bolt (2008)that there is a perceived link between sightedness and the phallus (sexuality) that needs to be severed, she disagrees with Bolt’s reading of power & gender dynamics in Jane Eyre. While this disagreement regarding interpretation is extremely interesting — a woman and a blind man disagreeing on interpretations of the ‘male gaze’ — the pertinent points of this discussion are their agreement regarding the sexualisation or asexuality of vision impaired characters. The potential for making power ‘multivalent’, ‘available in different ways to female as well as male characters, and available as sources of play as well as of control’ is significant (Kvistad 2012, p. 65). The aspiration to holding multivalent power should apply equally to nondisabled and disabled characters; however, representations of male characters with disability has tended to emasculate or even feminise them except when they are portrayed as sexual predators (Bolt, 2005b, 2005a, 2006, 2014b; Garland-Thomson, 2002, p. 18; Wilde, 2004, p. 366).

Bolt (2014) ‘argues that the metanarrative of disability itself is integral to the production of normativity’ (De Schauwer et al., 2016, p. 1100), with which Davis (2014)agrees. In The End of Normal, Davis discusses some effects of neoliberalism, arguing that neoliberalism can encompass many races and cultures within one country because of increased consumption. However, Davis posits that neoliberalism singles out disability as the element of diversity to be excluded, thereby defining normal and acceptable by what is neither normal nor acceptable: abnormality. D’Evie sums up Bolt’s writings on representations of blindness in literature:

Once culturally internalised as a state of terminal dependence and not-knowing, blindness became accepted within literature and film as a narrative prosthesis [a metaphor or literary device as opposed to actually representing disability] for helplessness and despair, and as a rationale for suicide. In psychoanalysis, blindness was deemed suitably horrifying to be theorised by Sigmund Freud and others as a symbolic stand-in for literal or figurative castration (Bolt 2014, 51–53). Incrementally appropriated through the misconceptions and biases of the ocular defensive, blindness entrenched metaphorically as synonymous with ignorance, indifference, neglect, with an unwillingness or incapacity to perceive or understand, with uncontrollable impulse (a blind rage) or a lack of consciousness (a blind stupor, blind drunk) (Bolt 2014, pp. 18-23 cited in d’Evie, 2017, p. 43).

Blindness, a feature of albinism, is so closely linked with negative states of mind, castration, wilful ignorance and a lack of ability in areas other than vision that it is used in ‘literary themes of sexual deficiency, frailty, displaced desire, and infantilisation’ (Bolt, 2005a, p. 146). Cultural beliefs about blindness have been so thoroughly ingrained as negative, a lack, and ignorance that most definitions of blindness in the dictionary have nothing to do with eyesight but are instead metaphors for kinds of ‘not knowing’ (Bolt, 2014b; d’Evie, 2017, p. 43). Although d’Evie’s above summary is accurate, she goes on to criticise Bolt because, she says,

a fundamental flaw has girded this curious semantic and metaphoric trajectory. Physiologically, blindness rarely equates with total darkness (d’Evie, 2017, p. 44).

It seems d’Evie missed Bolt discussing blindness and how most people have some degree of vision instead of the common misconception that ‘blindness’ means total darkness (Bolt, 2003, 2014b, p. 24-26). D’Evie’s comment is an accurate critique of common cultural belief although there seems to be increasing public awareness of a range of visual acuities (Bolt, 2014b, p. 26). These misconceptions are relevant to representations of albinism because many people with albinism are legally blind but have some degree of vision. Even those who are not legally blind can be ‘blinded’ by various lighting conditions, as is the case with albinism: bright lights and insufficient light result in a lessened ability to see.

As a professor ‘with a visual inhibition’ (Bolt, 2003), David Bolt is an authority on the subject of blindness and representations of blindness as well as ableism in literature. His many books and papers have been cited by researchers in many fields including education, disability and literature. Feeney (2007, p. 127, 2009)mentions Mitchell and Snyder’s (1997, p. 12) early discussion of disability as metaphor for nondisabled experience before leading into Bolt’s exploration of ‘benevolent’ representations of blindness. Schwab (2012, p. 278)acknowledges Bolt’s influence on her research in the area of disability and blindness but Frawley (2013, p. 240)goes further, saying that ‘Bolt’s analysis of Rochester’s blindness [in Jane Eyre] is especially effective at articulating [the] “complex embodiment” [of disability]’. Bolt (2008, p. 50) and Frawley (2013, p. 240) discuss ocularcentric views of beauty and appreciation of beauty, the primacy of haptic perception for the blind, the sexualisation of haptic perception, sexualisation/asexualisation of the blind and dependency versus agency.

Regardless of the way disability is portrayed, when disabilities are used in stories that are not primarily about disability, the tendency is to use disability as a metaphor for ‘non-disabled’ or ‘normative’ interests; this is called ‘narraitve prosthetic’.

Narrative Prosthetic

One of the reasons for public misunderstanding of disability, particularly albinism and vision impairment, is that representations of albinism and vision impairment are inaccurate. Instead of risking non-normative depictions of disability, Pryal and Higgins (2018)shift the blame for ‘traditional’ depictions of disability away from writers and gatekeepers onto audiences:

[audiences] expect an “overcoming” narrative. Or a tragic disabled character. Or a magical one, like Daredevil of the comic books. [Audiences] only allow disability narratives a slender path, and if you, as a disabled writer, deviate from that path, [consumers] strike back. Hard.

In short, Pryal and Higgins claim that audiences expect stories that include disability to focus on normative interests, giving normative [nondisabled] audiences a satisfying story arc that (usually) ends in healing or assimilation of the character with a disability (Darke, 1998; Dunn, 2015)or removal of the character with a disability (Darke, 1998). Davis (2014)argues that this is why disabled actors ‘cannot’ portray disabled roles in film: the audience requires the assurance that Hilary Swank who played the disabled character requesting help to die in Million Dollar Babycan walk across the stage to accept her Academy Award instead of dying in obscurity like the character in the film. Swank experiencing disability like her character would, allegedly, be too distressing for audiences.

Mitchell & Snyder (2000)take this exploration further, using the pun ‘narrative prosthetic’ to describe the ways in which literature (writers) uses disability as metaphor and narrative device, ‘a crutch on which literary narratives lean for their representational power’ and ‘the master trope of human disqualification’ that furthers normative (‘non-disabled’) interests in narrative plots (Mitchell & Snyder, 2000, p. 3). In other words, disability is used in ways not intended to represent disability, in stories intended mainly for audiences who are not disabled. Mitchell & Snyder’s work on disability is celebrated by their peers as ground-breaking (2015, p. 30), ‘well-supported by the texts they address’ (Shildrick, 2009, p. 17)and it is cited to support others’ work (Barnes & Mercer, 2010, p. 197; Markotic, 2008, p. 7). Ellis & Goggin (2015, p. 92-93) cite examples of disability being used as narrative prosthesis, however, they are clear that more work is needed in this field (Ellis & Goggin 2015, p. 83).

Narrative prosthesis: is it acceptable?

Some scholars argue with Mitchell & Snyder’s definitions of and objections to using disability as a narrative prosthetic. Schwab (2012)at first denies the reality of disability used as a narrative prop before acknowledging that disability isused as a narrative prosthetic. Schwab argues that narrative prosthesis — disability used as metaphor for normative interests — is justified because it is traditional.

David Mitchell and Sharon Snyder view the metaphorical use of disability critically as “an opportunistic […] device” (47). However, it should be pointed out that romance fiction—especially the historical and paranormal subgenres— relies heavily on the use of metaphors and specific, stereotypical plot elements, and employs them as a form of code (Schwab, 2012).

Schwab argues that it is acceptable to use disability as a narrative prosthetic because romance uses stereotypes as code. Internal worlds are reflected in characters’ appearances by having ugly villains or villains who are too good-looking to be true, all the while the heroes are tall, muscular and good-looking, albeit with the occasional scar or very occasional loss of one arm (never a leg) when becoming a war hero. Thus, according to Schwab’s description of potential romantic heroes, their visible differences do not detract from perceptions of masculinity or attractiveness, and these differences are not debilitating with the very occasional exception of a one-armed war hero. Delving deeper, Schwab says

In The Bride and the Beastand Yours until Dawnthe physical inability to see clearly is indicative of a lack of psychological insight, and functions as a symbol for internal problems that the characters have to overcome in the course of their stories… Thus, the metaphorical “cure as a narrative technique” that Davis refers to in regard to the novel as a genre (542) becomes a literal cure in Medeiros’s books  (Schwab, 2012).

Schwab either misses the point — that Lennard Davis (referred to in the quote) agrees with Mitchell & Snyder’s (2000) discussion of narrative prosthesis — or she objects to their criticism of disability used as a metaphor furthering nondisabled interests. When she says ‘in romance, disability is not quite the same disruptive force as described by Mitchell and Snyder’ (Schwab, 2012), she may be interpreting narrative prosthesis as the main thrust of a story, which is not required by the narrative prosthesis trope. Use of disability in a story is narrative prosthesis where the representation is not authentic but is instead used for ‘literary’ purposes. For example, Raymond Babbitt’s atypical representation of autism in Rain Man is a plot convenience, and Raymond’s primary purpose is to humanise his non-disabled brother. Once Tom Cruise’s character, Charlie Babbitt, has completed his character development arc, Raymond returns to an institution. Thus, the nondisabled protagonist is no longer inconvenienced by disability. Rain Manis an example of narrative prosthesis and normality drama (Darke 1998). Narrative prosthesis can also be called an ‘educational device’ (Vidali et al., 2008, p. 95). Another example of narrative prosthesis is in the above quote by Schwab (2012), where vision impairment is a metaphor for ‘a lack of psychological insight’.

Another form of narrative prosthesis that reinforces ‘othering’ of people with disabilities is using disabled characters to gauge the ‘moral standing’ of nondisabled/normative characters like Tiny Tim in A Christmas Caroland character with albinism Boo Radley in To Kill A Mockingbird(Bérubé, 2005, pp. 569-570). Teachers can help students learn to question the values embedded in these texts instead of blindly accepting literature’s transmission of values (Vidali et al., 2008, p. 95), thereby making ‘our classrooms more accessible and inclusive for all, and our society more participatory and democratic’ (Dunn, 2013, p. 96).

Appropriation of minority voices

From the PWA paedophile in Wolves(Ings, 2014), which was nominated for British Science Fiction Association Award for Best Novel, to the PWA villain in The Emperor’s Soul (Sanderson, 2012), which won the Hugo Award for Best Novella (2013) and was nominated for Goodreads Choice Award for Best Fantasy (2012), the evil albino trope appears to be thriving in the speculative fiction genre as Perks (2003)claims although Mswela (2013)explains that this trope is a barrier to equity and acceptance. The tendency for the abovementioned books to receive acclaim without critiquing appropriation of albinism is a concern. The debate author Lionel Shriver instigated a few years ago with her controversial Brisbane Writers Festival keynote speech explains arguments about appropriation of minority voices.

Shriver (2016)advocated exploiting minority identities:

The character is [the author’s] creature, to be exploited up a storm … sometimes we do a little research, but in the end it’s still about what we can get away with – what we can put over on our readers.

Shriver is not concerned with accuracy of representation and yet she claims to have been victimised for not adhering to liberal Democrat views. The reviewer she accused, Kalfus, acknowledges that his review mentions racism evident in the novel but denies that his review was intended to censor Shriver for cultural appropriation; even though he acknowledges offensive material, his criticisms centred on Shriver’s style (Kalfus, 2016b, 2016a).

‘Appropriation’ in this context is the use of a story that is not one’s own; ‘appropriation’ is a term commonly used when someone with greater privilege acquires or appropriates stories, culture and symbols of diversity that originated with a less privileged people group. Abdel-Magied (2016)sums up the argument against appropriation:

Cultural appropriation is a “thing”, because of our histories. The history of colonisation, where everything was taken from a people, the world over. Land, wealth, dignity … and now identity is to be taken as well?

In making light of the need to hold onto any vestige of identity, Shriver completely disregards not only history, but current reality. The reality is that those from marginalised groups, even today, do not get the luxury of defining their own place in a norm that is profoundly white, straight and, often, patriarchal. And in demanding that the right to identity should be given up, Shriver epitomised the kind of attitude that led to the normalisation of imperialist, colonial rule: “I want this, and therefore I shall take it.”

The attitude drips of racial supremacy, and the implication is clear: “I don’t care what you deem is important or sacred. I want to do with it what I will. Your experience is simply a tool for me to use, because you are less human than me. You are less than human…”

This is a rant against the act of cultural appropriation and against industry gatekeepers excluding minority authors while publishing white authors writing other races. Chitando (Chitando, 2008, 2014)supports Abdel-Magied’s position by arguing that literature modelling destigmatisation, inclusion, respect and integrity builds a more cohesive society. Nor does Chitando criticise Alumenda and Hanson for writing albinism without having albinism; instead, she praises their research, their promotion of inclusion and their promotion of respect for all.

Abdel-Magied’s argument against appropriation applies to albinism, which position is supported by academics such as Mitchell and Snyder (2000, 2006), who say that cultural locations of disability

…exist largely at odds with the collective and individual well-being of disabled people.

To demonstrate this undermining of collective well-being, we distinguish the locations under study here from more authenticating cultural modes of disability knowledge, such as the disability rights movement, disability culture… and other experientially based organisations of disabled people… a critique of these eugenic locations comes into being largely in the wake of … politicised disability efforts (Snyder & Mitchell, 2006, p. 4; italics in original).

The key is for representations to be authentic and to respect minority groups, promoting inclusion and not violence, for representations to havesufficient balance not to promote violence or discrimination, and not to promote traditional hierarchies nor to transfer guilt to the undeserving (Abdel-Magied, 2016; Chitando, 2008, 2014; Perks, 2003; Sancho, 2003).

The next section discusses how to analyse English texts so as to critique the positioning of disabled characters in the texts and to critique the positioning of disabled people in society.

English texts and critical discourse analysis

Critical discourse analysis (CDA) was selected as a means of interpret[ation] … because it focuses on the dynamics of power, ideology, and knowledge within discursive processes (Phillips & Hardy, 2002, p. 2).It provides a tool for determining the ways in which social power, dominance, and inequality are produced, reproduced, and resisted within the text and talk of a society (Henry & Tator, 2002, p. 72). These texts are assumed to create and shape identities and actions, form cultural capital, and produce and articulate broader ideological interests (Luke, 1997, p. 53) (Mohr, 2008, p. 31).

Critical discourse analysis (CDA) and multimodal discourse analysis (CDA’s multimedia-focused sibling) are more a toolbox of techniques for research rather than a definitive process. This toolbox allows researchers to explore power relations within society by analysing cultural texts, including Australian high school English texts.

Feely (2016)says the material world — like cultural texts and personal experiences — influence discourse which influences the material world; therefore, according to Feely, representations of disability influence audiences who then influence cultural texts. For example, actor Blake Lively has seen portrayals of blindness on screen. These portrayals show blind people looking upwards when talking to others so she assumed that blind people look upwards when talking to others. When she spent some time with blind people, she learnt that blind people look towards the person who is speaking, locating the person by sound (Duboff & Miller, 2017). These cultural texts and her experiences are part of the material and experiential world. Talking about her learning is discourse, which might affect future portrayals of blindness, thus affecting the material world.

Sancho’s (2003) research on representations of disability on British television confirms that television influences public attitudes, including attitudes towards people with disabilities.

[T]here are five accelerators to inclusion, which are: matching, likeability, incidental inclusion, celebrity and educational/information ‘shorts’.

In addition, there are two core rules [when aiming for acceptance of people with disabilities]: realism, and the avoidance of negative stereotyping. This is necessary to please those for whom television is a voice. Failure to adhere to these core principles will reinforce ignorance of the facts, or prejudicial views… (Sancho, 2003, p. 61).

Undermining factors included the fact that [in one example] both [a disabled person’s] mother and a policeman displayed very patronising attitudes; and it could be criticised for highlighting difference in the way disabled children were shown (Sancho, 2003, p. 63).

Sancho’s report goes into detail about analytic methods, discussing representations of disability and nondisabled interactions with disabled people. Representations likely to influence audiences to accept people with disabilities include characters with whom the audience can identify and/or like, the disabled person’s role, and the role of the people interacting with the disabled person. Hargrave & Livingstone discuss variations in research findings that are insufficiently consistent, cross-culturally applicable and/or replicable, but they acknowledge that representations of violence can particularly influence children.

There is a sizeable body of evidence that televised portrayals of aggression (typically, American action-adventure dramas intended for an older audience) may negatively influence the attitudes and behaviours of children, especially boys. Similar findings exist as regards aggressive content in film, video/DVD and, increasingly, electronic games… However, we suggest that at stake is the likelihood of risk rather than of inevitable harm, for, as the research also shows, not all in the audience are affected equally and many, it appears, are not affected (Hargrave & Livingstone, 2009, p. 248).

They argue that violence is more likely to influence children but acknowledge that other representations can cause harm, defined as providing a bad but influential role model, increased risk of violence and increased risk of emotional harm, in various situations. Sancho argues that likelihood of emulating behaviour depends on whether a character is likeable. For example, inThe Office, the manager is not likeable and is positioned as a focal point of conflict around whom his subordinates employ subversive tactics. Therefore, the office manager is not likely to influence audiences’ post-viewing behaviour. In contrast, in an episode of The Bill, a mother and police officer are patronising towards a person with a disability, which could influence audience behaviour.

The below charts discuss representation of television programs, defining ‘success’ as influencing audiences to accept people with disabilities while ‘failure’ is inspiring discrimination and even violence against people with disabilities.

Figure 3: Chart 2 Overview from Sancho 2003, p. 62

Figure 4: Chart 5 Overview from Sancho 2003, p. 68

Conclusion (of literature review)

Research into albinism in Western countries has primarily focused education and social services and Person/s With Albinism (PWA) opinions on representations of albinism except for the previously mentioned papers on albinism. Research into representations of albinism in cultural texts includes papers by TuSmith (1993), Robertson (2011), Brayton (2011)and Miller (2017), who discuss racialisation of albinism (hypopigmentation). Neither TuSmith nor Brayton discuss marginalisation of the hypopigmented while applauding the use of hypopigmentation to explore issues of race. TuSmith says that the ‘inscrutable Oriental’ stereotype dehumanises Chinese people while she promotes the use of the ‘inscrutable albino’ stereotype. She’s supported by Robertson who says use of albinism overcomes racism. Only Chitando (Chitando, 2008, 2014)and Miller (2017) discuss the vision impairment component of albinism; even so, their references to vision impairment and disability access are minimal although vision impairment is the part of albinism that cannot be easily overcome and hidden with hair dye, makeup, sunscreen and appropriate clothing.

Literature regarding representations of disability includes scholars like Mitchell & Snyder (Mitchell & Snyder, 2000; Snyder & Mitchell, 2006), Darke (1998)and Bolt (Bolt, 2005b, 2006, 2008, 2014b) breaking ground in this field, but no equivalent investigation into representations of albinism has occurred. The literature focusing on representations of albinism focuses on race without looking at the existing international literature concerning lived experience of racism; lived experience of race and albinism; nor does it look at literature discussing representations of disability as this discussion relatesto people with albinism.

It is unusual for fictional representations of albinism to accurately portray the impacts of hypopigmentation and vision impairment or to depict a hypopigmented character using access technology like Casper/Whitey in Me, Myself and Irene(Farrelly & Farrelly, 2000). It would take many realistic portrayals of vision impairment, disability access and characters with albinismand agencyto familiarise the public with albinism and change assumptions that vision impairment equates to incapacity. Audiences exposed to the idea of successful blind lawyers and social workers are more likely to accept the reality that disability does not mean dysfunction. Accurate representations of albinism in contemporary culture have potential for building acceptance through familiarity while also educating audiences about PWAs’ abilities and disability access. Failing that, encouraging critical analysis of high school texts may help students interrogate assumptions about the position of disability and disabled people in society.

Texts for Analysis

NSW	To Kill a Mockingbird by Harper Lee	book
	The Grey King by Susan Cooper	book
	The Amazing Maurice and his Educated Rodents	website
	Harry Potter and the Prisoner of Azkaban	book
	Harry Potter and the Philosopher’s Stone	film
	The Lion, the Witch and the Wardrobe	book
	The Princess Bride	film
	Samurai Kids: White Crane	book
	The Graveyard Book by Neil Gaiman	book
	All the Light We Cannot See by Anthony Doerr	book
	Tehanu by Ursula Le Guin	book
	Sabriel by Garth Nix	book
SA	Uncanny X-Men, Marvel Comics	graphic novel
	The Sandman series by Neil Gaiman	graphic novel
WA	Uncanny X-Men, Marvel Comics	graphic novel
	The Sandman series by Neil Gaiman	graphic novel
	To Kill a Mockingbird by Harper Lee	book
TAS	All the Light We Cannot See by Anthony Doerr	book
	Dark City [1998 film] by Alex Proyas	film
	King of Shadows by Susan Cooper	book
QLD	Bladerunner	film

 

Notes:

• NT complies with SA requirements for years 11 and 12 but allows teachers to choose texts for years 7 to 10.
• Although Australian states and territories are consistent regarding providing prescribed text lists for years 11-12, years 7-10 are variable. NSW provides the longest lists of texts for the most years of high school.
• Tasmania and the ACT consider high school to be 7-10 and college to be years 11 and 12. The above list includes texts for years 7-12 where there are prescribed text lists.
• A few of the listed texts may not be found to comply with the requirement of featuring characters with albinism.
• Victoria’s prescribed texts did not include any with characters with albinism.

Research questions

General

• How are people with albinism represented in Australian high school English texts?

Specific

• What is privileged in the texts? (Dunn, 2015, p. 9)
• To what extent do public reception documents (discussion questions, study guides, and quizzes) for those books challenge or perpetrate harmful stereotypes? (Dunn, 2015, p. 3)
• What “cultural work”… does this text do? In other words, to what extent are harmful stereotypes about disability cultivated, disrupted, or both? (Dunn, 2015, p. 10)
• What labels are used to identify certain characters to the rest of the group? This could take the form of name-calling or identification with (or by) a physical, cognitive, ethnic, or cultural trait, among other things (Preston, 2010)
• How might hidden, harmful assumptions about disability be recognised so that students might become “resisting readers”? (Dunn, 2015, p. 10)

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