Fearsome freaks: how the dominant discourse disenfranchises people with albinism

Pop culture discriminates against people with albinism. Even television series like Star Trek: Discovery, renowned for its progressive nature and inclusion of diversity, vilifies people with albinism.

In 2018 I presented at three different international academic conferences about my research into representations of albinism in popular culture. This is a recap of one of those presentations. Here is my draft research proposal that was on track to be confirmed as a PhD research project until the University of Canberra refused disability access and supervision while supporting staff who harassed, bullied and assaulted me while on CCTV cameras. Thus my formal academic research is now on hold, but I am continuing this research as a passion project.

Note:

I’ve added explanations to this post that I didn’t have time to include in my original presentation. However, I’m still trying to keep it relatively brief. Every slide could have an essay of its very own.

My original presentation was 15 minutes. This ‘recap’ would take a lot longer but I’ve tried to give context where essential. It’s been over a year since I did this presentation so please, if I’ve made any errors, if something needs more explanation, whatever, please comment and I’ll try to either answer your questions or edit the post.

Keywords: albinism; disability; contemporary culture; vision impairment

Conference theme: Dominance and race, gender, sexuality or other structural categories of difference

Abstract

Representations of people with disabilities in popular culture can contribute to their stigmatisation and marginalisation, positioning us as Other. My thesis research is directed at identifying and critiquing the portrayal of people with albinism in speculative fiction.

People with albinism are marginalized in contemporary Western culture on at least two fronts. Firstly, a significant degree of albinism makes us look visibly different — whiter — than ‘normal’ whites. Secondly, albinism causes vision impairment relative to the degree of albinism; people with vision impairment to the extent of becoming a disability tend to be isolated even if we don’t look different. Other issues like men with disabilities having a higher employment rate than women, and people of colour with albinism experiencing additional difficulties are beyond the scope of a twenty-minute talk.

Comparing reality with fiction

Using myself as a ‘model’ to compare with speculative fiction characters, I will demonstrate how features of my vision impairment exhibit themselves, feeding the dominant discourse that shapes perceptions of people with albinism. Then I will discuss how the discourse shapes representations of albinism — from Victorian-era steam punk to Klingons — perpetuating misconceptions and alienation of people with albinism.

Discrimination is self-perpetuating

Incorporating misunderstandings based on representations of albinism and paralanguage common to people with albinism, I will discuss how the dominant discourse — via contemporary culture — is self-perpetuating, illustrated by the campaign for better representation in the Da Vinci Code movie, Dennis Hurley’s own voices comedic exposé and subsequent mainstream movies like The Heat and Vamps.

Citing Black Lightning, I will conclude with the most robust representation of albinism I have discovered in speculative fiction to date and explore the strengths of this fictional representation.

Brief outline

• Other vs homogeneity
• Define albinism
• I will discuss how the discourse shapes representations of albinism — from Victorian-era steam punk to Klingons — perpetuate misconceptions and alienation of people with albinism.
• the dominant discourse — via contemporary culture — is self-perpetuating, illustrated by the campaign for better representation in the Da Vinci Code movie, Dennis Hurley’s own voices comedic exposé and subsequent mainstream movies like The Heat and Vamps.
• Citing Black Lightning, I will conclude with the most robust representation of albinism I have discovered in speculative fiction to date and explore the strengths of this fictional representation.

Did you know:

• Albinism is caused by insufficient pigment
• There are degrees of albinism
• Your eyes have pigment to enable you to see
• As a general rule of thumb, the worse the degree of albinism, the less a person can see; however, there are exceptions to this rule
• Echolocation is not a substitute for a cane. Daredevil makes me stabby.
• If you want more information, I will bore you over coffee.

Albinism in brief

Albinism is a medically-defined condition that is the result of insufficient pigment. Just as ‘normal’ people of every race have skin of various shades, there are various shades of albinism even within the same people group. That means that ‘white’ people might have a minor degree of albinism but still have blonde or red hair while ‘black’ people might be a slightly lighter shade of brown than is normal for their people or they might look ‘white’ or even paler than the normal ‘white’.

Pigment in your eyes

Inside the human eye there is pigment to enable people to see. Without enough pigment in the retina, light bounces around as in a pin hole camera without a black coating inside. If the eyeball and iris don’t have enough pigment, light pass through them. Imagine a pin hole camera with an aperture much larger than a pin hole. The maculae and fovea (bits of your eye that focus on objects) are made of pigment, so without enough pigment these bits are underdeveloped. And then there is the optical nerve, which can be damaged by albinism.

If someone has only a tiny degree of albinism, they might be able to see well enough to drive, like Sarah Monette who mistakenly claims she has ‘no pigment in my retinas’. (Sweetie, if you had NO PIGMENT in your retinas, you’d be totally BLIND.) She can drive so she has very mild albinism and is not disabled.

Echolocation is not a substitute for a cane

‘[W]hile echolocation allows [Daniel Kish] to detect objects up to 100 yards away, he hasn’t ditched his white cane.
“We can kind of think of echolocation as being sort of far vision; it’s good for things that are far away and off the ground,” he said. “The cane is good for things that are nearer and at ground level.“’ – ABC, accessed 22 May 2018.

Daredevil is NOT representation

Whenever anyone tells me Daredevil is ‘representation’ I get stabby. Daredevil conceals his abilities, supporting the ‘fake disabled person’ trope that breeds so much discrimination. Then, whenever he feels like it, he drops his cane to do parkour. Echolocation is not a substitute for a cane. If Daredevil were real, he’d be dead the first time he tried parkour.

Parkour is jumping around between roofs. Daredevil would die while relying on echolocation to see stairs that go down or small objects on the ground. Like things he could trip over before plummeting headfirst to his death.

Degrees of albinism in a Venn Diagram

Anthony Rapp has, by his own admission, NOT been formally diagnosed with albinism. Apparently his mother decided he ‘has the strain’ because he’s fairer than the rest of his family. That’s a possibility: he’s pale, needs glasses and clearly struggles with bright lights on set when filming Star Trek: Discovery. However, he’s also not disabled. By his own admission, his glasses correct his eyesight.

And don’t get me started on Voq, the character from Star Trek: Discovery with albinism.

Nystagmus: a feature of albinism

In contrast, I was diagnosed at 6 months of age because my eyes flickered. Mum took me to medical experts until an ophthalmologist diagnosed nystagmus (flickering eyes) caused by albinism and an inability to focus. It’s incurable but glasses help — to a point. From 6 months of age, professionals and even the department of social security (now called ‘Centrelink’ in Australia) have classified me as disabled. However, I’m not actually blind. I’m the fairest in my family but not as radically different as Marvin “Krondon” Jones III.

Marvin “Krondon” Jones III is a rapper turned actor who plays Tobias Whale on Black Lightning. He is an African American with albinism. Although Jones plays an evil character — hear that? It’s the sound of most of the albinism community being unimpressed — Jones’s experience of albinism is influencing the writing on the series. More on that later. For now, note that Jones has nystagmus, a common feature of albinism when it is severe enough to cause vision impairment classified as a disability.

Venn Diagram

This Venn diagram shows the intersection of impairment, albinism and race. I’ve used the term ‘impairment’ not ‘disability’ because some people with albinism are not disabled, like Sarah Monette and Anthony Rapp. If you can drive, you don’t qualify as disabled due to vision impairment.

Thus below you can see that albinism can and does overlap with impairment and race.

To further illustrate this Venn diagram, see Shari Parker with her ‘telescope’ that enables her to see things at a distance. She’s ‘white’ (i.e. of European descent) but disabled. In contrast, Diandra Forrest has slightly darker hair but she also has albinism to the extent that she has poor eyesight that resulted in nystagmus. I cannot find mention online of how limited Diandra’s eyesight is but she clearly has low vision; she is an African with albinism.

“It [modelling] shouldn’t be a freak show” — Diandra Forrest.

And, in my opinion, representations of albinism in pop culture should not be a freak show either.

The Extraordinaires: a freakshow.

Nastia Zhidkova is a real person with albinism and she has violet not pink eyes. She says she is legally blind and has 8% vision. A person with pink eyes will have even less visual acuity. https://www.facebook.com/nastia.zhidkova/.

Michael Pryor, author of The Extraordinaires, meant well when he wrote these books but he didn’t do essential research. Evadne, his character with albinism, has pink eyes. For her eyes to be pink, Evadne would inevitably have less pigment and therefore less vision than Nastia. But Evadne’s glasses fix her eyesight so it’s better than the ‘normative’ werewolf with excellent vision. The werewolf sometimes asks Evadne to share what she sees because she can see better than him.

And now the freakshow

‘It was the juggler. The young female juggler. The young female juggler with the white hair, white skin and pink eyes. The startlingly beautiful young female juggler with her long white hair, white skin and pink eyes behind the spectacles she was looking at him over.’

Evadne Stephens should be in the green section of the Venn diagram where albinism and impairment/disability overlap but the text positions her in blue. However, the text still positions her as a freak. Look at the above paragraph demonstrating that even the good guy sees her as a freak. Old men say creepy things to her that also position her as a freak while making my skin crawl.

Voq the ‘albino’ from Star Trek: Discovery

Voq from Star Trek: Discovery is an ‘albino’. Screenwriters haven’t bothered researching albinism so they don’t know the term ‘albino’ is offensive to most people with albinism. Nor are they aware that albinism affects eyesight.

Klingons as a species shown over multiple spin-off series and movies have a multitude of colours. Never before has Star Trek mentioned racism or discrimination due to color within the Klingon race. Therefore, Voq’s paleness should not result in his alienation. However, he has no house and as a child was beaten up by others. The series strongly implies this is because of his unacceptable coloring.

Voq is very pale compared to even ‘white’ Klingons.

(Photo is a screenshot accessed from http://memory-alpha.wikia.com/wiki/Albino  on 22 May 2018)

Therefore, Voq should be in the green or brown sectors of the Venn diagram but there is no mention of vision impairment. Late in the series, viewers learn more about Voq’s identity. This shows he should be positioned in the brown section where all three circles overlap: albinism, race and disability. However, it appears Star Trek situates Voq in blue without explaining why his peers rejected him other than him being ‘an albino’.

Are the writers aware of the link between albinism and vision impairment?

Do the writers simply accept that beating up people with albinism is normal? Based on my experience and that of many other people with albinism, I can confirm that it is, to some extent, normal. And television shows like Star Trek: Discovery aren’t helping.

(Photo is a screenshot accessed from http://memory-alpha.wikia.com/wiki/Albino  on 22 May 2018)

Tobias Whale played by Marvin “Krondon” Jones III

In the video that cannot, unfortunately, be embedded in the above slide, Tobias Whale visits Khalil Payne in hospital after a shootout ended Khalil’s athletic career. Whale is creepily watching Khalil sleep. When Khalil wakes, he goes to turn on the light but Whale asks him not to because bright lights hurt his eyes.

Photophobia: it’s not what you think

People with albinism beyond a certain degree have a condition called ‘photophobia’. It’s not a fear of bright lights, it’s that bright lights diminish our ability to see. Bright lights can even blind us. When someone uses flash photography on me, I can see the afterimage for maybe ten minutes later. It’s blinding and not just for the seconds around the flash. And yes, when albinism is sufficiently severe, bright lights are painful. I loved Gremlins for this: ‘Bright light! Bright light!” And, likewise, I cringe and duck, shielding my eyes from the pain.

What Whale doesn’t mention is that, in a really dimly lit room like this, he would likewise have very little vision. While bright lights can blind, so does insufficient light. In my experience insufficient light doesn’t hurt, though. And in familiar territory, I learn to work around not being able to see.

“Twitchy-ass eyes”

The not-embedded video also includes a second clip where Whale’s father congratulates himself for not abandoning Whale after his mother left. Daddy also says “I even tried to take care of those twitchy-ass eyes of yours”. He’s referring to Whale’s (and Jones’s) nystagmus. Shots that follow in the series show Jones’s eyes ‘twitching’. This was the first time I recall ever hearing nystagmus referenced on screen and my husband confirmed that Whale/Jones’s eyes were genuinely displaying signs of nystagmus.

Tobias Whale from Black Lightning should be right where he is positioned in the Venn diagram: in the intersection between albinism, race and impairment/disability.

He has photophobia and nystagmus, both of which cause loss of vision. He probably has macular hypoplasia and trans-illumination of the iris, meaning that his eyesight is really bad. Tobias does not drive in the TV series.

Why is this representation more realistic than others?

Tobias is played by an African American with albinism!

BUT All impaired characters on Black Lightning are EVIL.

Tobias Whale, the guy with albinism, is evil. He’s been evil since the original comic book series back in the 90s. In first season of the TV series Khalil goes from being a good guy while not disabled to a bad guy after becoming disabled. Anyone else notice a theme here?

All overweight or ‘less pretty’ characters are either victims or evil

Out of all the cast, the overweight and less attractive characters are either villains or victims. The overweight yet absolutely amazingly gorgeous Lady Eve (Jill Scott) is a villain. She cites actual witchcraft practices in Africa — killing people with albinism and using their body parts for magic — as a means of threatening Tobias Whale. Lawanda White (Tracey Bonner) is, shall we say, not slim although she’s not obese. She’s not as attractive as the main cast either. Lawanda becomes a victim.

Mainstream discourse about minorities

What does the mainstream tell us about disability? It’s very similar to what pop culture says about refugees. I think Ben Aaronovitch says it best:

“The media response to unusual weather is as ritualized and predictable as the stages of grief. First comes denial: “I can’t believe there’s so much snow.”

Then anger: “Why can’t I drive my car, why are the trains not running?”

Then blame: “Why haven’t the local authorities sanded the roads, where are the snowplows, and how come the Canadians can deal with this and we can’t?”

This last stage goes on the longest and tends to trail off into a mumbled grumbling moan, enlivened by occasional ILLEGALS ATE MY SNOWPLOW headlines from the *Daily Mail….*”
― Ben Aaronovitch, Whispers UnderGround

Basically, people with disabilities are reviled and blamed for much of society’s woes. And when they’re tortured and murdered, the perpetrators are not even charged with hate crimes. Judged tend to let the perpetrators off lightly because the responsibility for the crime is largely placed on the disabled person for not living in an institution.

Mainstream society represents people with albinism as Nazis responsible for crimes against humanity in World War II, and thereby exonerating ‘normative’ (normal) white people. People with albinism are depicted as creepy (To Kill A Mockingbird, Alabaster), as vampires and supernatural creatures and villains. On the rare occasion people with albinism are depicted as ‘good guys’ like in The Extraordinaires, the character is exocticised,  fetishised and represented poorly.

First they came for the people with disabilities but history largely forgot

I’m amazed at how few people realise that Nazis murdered hundreds of thousands of disabled Germans while developing their mass murder and body disposal equipment. Then, having emptied their institutions, they moved Nazi offices into those buildings. And transported the gas chambers and incinerators to places like Auschwitz. Even the famous call to arms omits mention of the disabled Germans who died.

First they came for the Socialists, and I did not speak out—
Because I was not a Socialist.

Then they came for the Trade Unionists, and I did not speak out—
Because I was not a Trade Unionist.

Then they came for the Jews, and I did not speak out—
Because I was not a Jew.

Then they came for me—and there was no one left to speak for me.

— Martin Niemöller (1892–1984) https://www.ushmm.org/wlc/en/article.php?ModuleId=10007392 accessed 4 June 2018

While people with disabilities are edited out of history and vilified in popular culture, we risk history repeating itself. Those who feel they are safe because they fit well within the Bell-shaped Curve should, however, beware.

The Bell-shaped Curve

You might feel safe because you’re not an outlier. The above graph shows degrees of outliers.  The below graph shows a portion — let’s say the too-white and too-black in society — being ‘annexed’.

The above slide shows a class photo: all ‘white’ children in 1977, two years after the White Australia Policy was abolished. I’m the outlier: the extra-blonde girl in the back row. The teacher carefully positioned me so the boy in front of me hid me from the camera but the photographer refused to take the photo. The teacher found me a stool to stand on instead. If you’re an outlier in a society that does not accept diversity, you’re at risk of becoming invisible or even being eliminated altogether.

Once outliers are removed, other previously-safe people become the new outliers. First the disabled, then socialists, trade unionists and Jews… Then it was the Poles in Poland… Then…

History gives us a stark warning.

This Perfect Day

Many years ago, well before the current resurgence of nationalism and neo-Nazis, the book This Perfect Day described a society so obsessed with normalising people to remove outliers. By the time of the novel, a man with one green eye and one blue eye was considered to be such an outlier that the government forbade him from having children. Likewise for a woman whose breasts were ‘too large’. (It seemed that this society valued very small breasts, possibly no larger than A or B-cups.)

This may seem irrelevant but where do you stop once you start ‘purifying’ the human race?

iZombie

iZombie is a TV series about zombies who are albino-types: white or near-white hair and, when they get angry, their eyes turn red. Through the course of the 5 seasons, the series deals with many issues including discrimination, racism, fear of contagion, hate crimes and more.

While the zombies are living in secret, there is a campaign encouraging them to ‘tan and dye’. In other words, to ‘pass’ for normal by concealing their unique characteristics. The below slide shows the series cover, a ‘tan and dye’ poster and a couple of characters telling Liv, the white-haired zombie, to tan and dye.

However, unity in diversity — acceptance, not mere tolerance, of difference — builds the most resilient society. I’ve replaced slide in favour of embedding the video the slide referenced.

Germans on the rise! is by Neo Magazin Royale, the people who brought us the Every Second Counts campaign where countries around the world asked Trump if they could be second to America. They’re awesome.

Finally, I closed with this image: First they came for the Muslims and we said, “Not this time!”

References

Aaronovich, B. (2012) Whispers Under Ground, Gollancz.

Albinism Australia, photo of Dr Shari Parker, accessed 4 June 2018 http://albinismaustralia.org/.

Akil, S. (2015) Black Lightning, Berlanti Productions.

Black Lightning photos, screenshots, clips and promo material. Accessed in various locations 22 May 2018, including https://www.monstersandcritics.com/smallscreen/who-is-tobias-whale-on-black-lightning-marvin-krondon-jones-iii-is-a-rapper/, image watermarked the property of television channel CW.

Garber, M. (2017) “‘First They Came’: The Poem of the Protests”, The Atlantic, accessed 4 June 2018 https://www.theatlantic.com/entertainment/archive/2017/01/first-they-came-poem-history/514895/.

Haynes, N. (2015) portrait of Nalini Haynes, unpublished.

Hunt, T. and Diaz, J. (2009) Albinism: Caught Between Dark and Light, ABC accessed 4 June 2018 https://abcnews.go.com/2020/albinism-albinos-overcoming-social-stigma/story?id=11446431 .

Kitchens, S. (2017) ‘Diandra Forrest Opens Up About Her Albinism and Being Comfortable in Her Own Skin’, Glamour, accessed 4 June 2018 https://www.glamour.com/story/diandra-forrest-beauty.

Levin, I. (1970). This Perfect Day, Random House.

Marlowe, K; and Brogaard, B. (2015) ‘The Blind Individuals Who See By Sound’, Discover Magazine, accessed 22 May 2018 Image: http://discovermagazine.com/2015/july-aug/27-sonic-vision .

MathCaptain (n.d.) Bell Shaped Curve, accessed 4 June 2018 http://www.mathcaptain.com/statistics/bell-shaped-curve.html.

Moisse, K. (2011) ‘Like a Bat, Blind Man Uses Sound to ‘See”, Human Echolocation published on ABC, accessed 22 May 2018 https://abcnews.go.com/Health/MindMoodNews/blind-man-echolocation/story?id=13684073 .

Neo Magazin Royale (2016) ‘BE DEUTSCH! [Achtung! Germans on the rise!]’, accessed 22 May 2018 https://www.youtube.com/watch?v=HMQkV5cTuoY.

Peopledotcom (n.d.) Anthony Rapp photo, accessed 22 May 2018 https://peopledotcom.files.wordpress.com/2016/11/anthony-rapp742.jpg.

Pryor, M. (2011) The Extraordinaires: The Extinction Gambit, Penguin.

Ruggiero-Wright, D.; Thomas, R. (2015) iZombie, Spondoolie.

United States Holocaust Memorial Museum (n.d.) ‘MARTIN NIEMÖLLER: “FIRST THEY CAME FOR THE SOCIALISTS…”‘ accessed 4 June 2018 https://www.ushmm.org/wlc/en/article.php?ModuleId=10007392.

Wikia (n.d.) Voq image from Star Trek: Discovery accessed 22 May 2018 http://memory-alpha.wikia.com/wiki/Albino.

Zhidkova, N. (n.d.) photo and information about vision impairment accessed 4 June 2018, https://www.facebook.com/nastia.zhidkova/ .

Related:

Albinism representations Illustrating Doerr’s statement implying that the ‘true’ Aryan does not have albinism Representations of Albinism in Australian High School English Texts