Fearsome freaks: how the dominant discourse disenfranchises people with albinism

This entry is part 2 of 2 in the series Essays on representations of 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.

how mainstream pop culture excludes people with albinism albinism explained: text shown here is also below the image

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

albinism causes poor eyesight. This slide shows the problems with echolocation, described below the slide

‘[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

3 people with albinism positioned on a Venn Diagram, explained below the slide

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.

Albinism as a Venn Diagram, explained below the slide

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.Shari Parker and Diandra Forrest are two people with albinism, positioned on a Venn diagram

“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.The Extraordinaires is a book with a protagonist who has albinism; this slide shows part of the problem with that representation (explained below)

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)

Voq from Star Trek Discovery has albinism

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.
Marvin Krondon Jones has albinism

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.

black lightning victimises or makes 'less pretty' characters including those with albinism evil
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 AaronovitchWhispers 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’.

too white in a White Australia: one child with albinism in a class

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.

Izombie protag is an albino type, Tan & Dye poster

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/ 

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20 Comments

    1. It’s a long article with lots of images, which is why it might be a bit slow. You’ll find most other pages and posts on this website load a lot faster.

  1. Thanks so much for posting this second part of your work. I’m using it to reference and self-check my current pre-pub edit, a spec fic novel, in which the African-European MC is ‘albino’ and embedded in an overt context of other-ness – a travelling circus which includes a 1920’s style ‘freak show’. I feel I’ve already largely been aligned with your views – prior to having read them – but have downplayed the impairments of albinism.

    (Due to narrative constraints, eye issues have been effectively reduced / dismissed by references to (sophisticated future) surgery and only mild photophobia; skin sensitivities downplayed via references to covering up in direct sun. So what is left to ‘other’ my MC is just their superficial appearance.)

    My focus has been on a rites of passage story within a group (‘family’) of normalised ‘others’ travelling through an ‘other-rejecting’ post-Collapse world. (There are many other aspects to how and where I take the narrative from that foundational group, and I expand on the simple reality that strength comes from diversity within all, not just human, social animals.) In any event, I am moderately bolstered by reading your analysis that I haven’t completely failed the basic reasonable expectations of portrayals of ‘difference’. Kind regards, Ben

    1. No. Just NO. You haven’t done your research, you admit you have no lived experience of albinism and, from what you’ve written here, I anticipate that you haven’t bothered researching what it’s like to live with albinism in Africa or what it’s like to live in a freak show either. NO. 1 star rating. For bigotry and misappropriation.

      Also, you should examine your motives. If you think that writing a book like this – featuring disability and people of color – will win you awards and get you noticed, think again. Do you want to be noticed as a person who does it VERY VERY BADLY? And has reviewers with albinism slamming your work?

      Write what you know. Don’t misappropriate others’ stories. And don’t do a Lionel Shriver.

      1. Nalini, hi. As one professional full-time writer to another, you have made serious accusations against me on multiple social media platforms – of bigotry, of not performing research, of ‘very, very bad’ writing, of misappropriation (of the lived experience of albinos, disabled and non-Europeans), and of doing so to win prizes – all without having read a single word of my work.

        As a former Critical Care and Remote Area Nurse who has worked extensively across Indigenous Australia and with differently-abled people, as a former science journalist, as a full-time writer for television who is required to research constantly during his working day, as a would-be author who has spent years researching this particular book, and who has reached out to you as part of that process, I respectfully ask that you engage with me on this topic or allow me right of reply. If you feel unable to do either, I would respectfully ask that you at least refrain from further vilification of me, my work, and my publisher.

        1. In your first comment on this thread, you declared that you did not know about vision impairment in people with albinism. Therefore YOU HAVE NOT DONE YOUR RESEARCH. QED.

          1. Good morning and happy Christmas, Nalini – thank you for responding.

            I apologise for not being clearer in my original post – the manuscript itself is still a work-in-progress, still being edited, and still being researched – research, as you know, never ends. This is why I was pleased to find your work to reference, and why I gave thanks. Raising legitimate concerns at this stage enables me and my publisher to get it right.

            I originally intended my novel’s hero to have the appearance of an albino to set him apart in a world that does not tolerate difference – hence the quote marks around the term in the first sentence. In regard to the serious real-world eyesight-related issues, I’ve indicated surgery available in 2070 has been effective.

            I have spent nine years researching all aspects of the novel, and a simple theme emerged early in the process – diversity is strength. The protagonist’s differently-abled colleagues are also his family, and he learns to support them as they have supported him. They are not, and never were, ‘freaks’ but diverse and rounded humans with real lives and histories, bound together in terrible adversity.

            I welcome any and all constructive advice from you, as I do from any expert source, but I ask again, please engage with me on this, rather than accuse me and my poor publisher of crimes we simply have not committed.

          2. Your original comment specifically stated that
            “Due to narrative constraints, eye issues have been effectively reduced / dismissed by references to (sophisticated future) surgery and only mild photophobia; skin sensitivities downplayed via references to covering up in direct sun. So what is left to ‘other’ my MC is just their superficial appearance.”

            You could have made him a normative white person in an all-black society but you’d run the risk of major accusations of racism. You could have made him BLUE. Instead, you have a ‘post-collapse’ world where apparently a minority person, who would by definition be disadvantaged in all ways including social capital and financially, and you write your character magically accessing surgery to remove his disability. This is NOT representation. This is misappropriation.

            I could spend hours unpicking what you’ve said in the above comment and in this thread but IT’S CHRISTMAS DAY. I’m going AFK and I will NOT respond again to any comments from you for a couple of days.

        2. If you want to demonstrate you’ve done your research, prove to me that you’ve consulted with Africans with albinism and show me your research on people with albinism in freak shows. That information is readily available. Instead, you’ve made three comments on this post without ever demonstrating research other than “Oh, gee, your fact-filled article doesn’t fit my narrative so I’m going to reject facts in favour of my fiction.” Which you then followed up with “HOW DARE YOU CALL ME OUT FOR MISAPPROPRIATING MINORITY STORIES!”

      2. Hi again, Nalini. I’ve respectfully asked you to end unwarranted vilification of me, my work, and my publisher – one of the few small, independent publishers left to Australian writers – by removing your online claims about work that you have not read, that is still in editing, and still being researched.

        I’ve politely asked you to engage with me but you’ve declined to do so, have removed my request from your page, and have not removed accusations of what amounts to accusations of professional misconduct on Twitter. If you prefer not to engage directly with me, I’d like to suggest mediation via the auspices of the Australian Writers’ Guild, the ASA, the ACT Writers’ Centre, or any other professional writers’ organisation you feel comfortable with. Please let me know via my email address.

        1. You lodged a comment after 7am on Christmas Eve and apparently expected me to leap online to do your bidding? Hell no. This is the first time I’ve logged in to my website in a couple of days. I deal with comments when I get to them. I’m not your slave. FYI I did NOT remove your request: your request was waiting for moderation. In your above comment you have made unfounded allegations.

          You came on to my website in the hopes of getting publicity. You’re getting it. If the publicity you’re getting isn’t to your satisfaction, perhaps you should have thought about ACTUALLY RESEARCHING ALBINISM before writing your book and before coming onto my website to congratulate yourself.

          If you want mediation, fine. I’ll attend. Unlike the CSFG, the Canberra Speculative Fiction (writers) Guild that kicked me out for writing albinism effectively in near-future speculative fiction, I’m prepared to defend my comments and my actions.

          1. Nalini, as you haven’t specified a preferred professional writing organisation for mediation, I’ve contacted some of those I belong to, and one other. I asked CSFG if any member was still on sufficiently good terms with you to offer to mediate, but was informed they were unable to help due to legal threats from you. AWG don’t perform mediation at this level, but ASA may be helpful – query still pending. The Arts Law Centre do ‘Alternative dispute resolution’, and the link is here:

            https://www.artslaw.com.au/information-sheet/mediation-service/

            Would you kindly look over their terms and conditions and let me know if it suits your needs.

            In the meantime, I would again ask you to please remove defamatory claims against me, my work (which, again, you have not read), and my publisher from your social media platforms. I can assure you they are all incorrect, unjustified and hurtful to me. Were you to remove those claims and instead engage with me on the concerns you may have, I’m confident you would realise your attacks are unnecessary and inappropriate.

          2. I’m in the middle of trying to organise assistance for bushfire refugees but sure, a nondisabled white entitled author deserves my time and attention at this time BECAUSE STRAIGHT WHITE NONDISABLED MALE.

            The CSFG does not offer mediation. And if they did, them kicking me out FOR WRITING DISABILITY ISSUES IN SPEC FIC would automatically remove them as a credible source. Choose your mediator. I’ll attend. You’ve found the hill I’m prepared to die on. Be prepared for your mediator to be astounded that you’re wasting their time.

          3. Also, I recommend that you read the post upon which you commented. Read it IN FULL. Then read your comments carefully. You’ve outwitted yourself. I’m convinced this is a publicity stunt.

          4. PPS You are paying for mediation. I’m not paying a cent. You’re wasting my time in an attempt to get notoriety so people will buy your books. Doing this DURING A NATIONAL EMERGENCY… no words.

          5. NSW declared a 7-day STATE OF EMERGENCY this afternoon. I’ve just arranged to shelter some #BushfireRefugee cats (we don’t have room for humans) and I’m struggling to breath with the extremely hazardous levels of pollution in Canberra during this bushfire crisis.

            And now the ACT has issued a State of Alert.

            https://twitter.com/ACT_ESA/status/1212622662645583872

            But Ben Marshall’s feelings are hurt. They’re hurt because Ben Marshall came on to my website and commented on this post that discusses how people with albinism are represented poorly. Ben Marshall seems to have expected accolades. But I pointed out that his description of his work was in itself a POOR REPRESENTATION to be avoided. So Ben Marshall started threatening action. He even made false allegations that I’d deleted his comments on this post simply because his comments were in moderation on Christmas Eve. I had to respond to escalating harassment from Ben Marshall ON CHRISTMAS MORNING because he was angry I hadn’t responded the day before. Now his harassment continues during this STATE OF EMERGENCY.

            But, sure, let’s give Ben Marshall the publicity he wants and deserves. I’m sure the spec fic community will give him all the awards for writing albinism without accurate representation and writing race without consultation. [snark].

            In 2019 I decided to start the disability awards that I planned in 2016 for 2017. I dropped the awards in 2017 due to disability discrimination, harassment and assaults at the University of Canberra that were ongoing for 2 years. I was also slightly distracted in 2017 by pain, surgery to remove an 8cm cyst then more pain. So the awards didn’t happen that year. In 2019 I planned to continue those awards in 2020. I already know who won those awards. I’ll announce winners once I have trophies organised.

            https://www.darkmatterzine.com/wp-content/uploads/2020/01/Screen-Shot-2020-01-02-at-5.35.26-pm.png

  2. Having read this I believed it was extremely enlightening.
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  3. Nalini, hi. As one professional full-time writer to another, you have made serious accusations against me – of bigotry, of not performing research, of ‘very, very bad’ writing, of misappropriation (of the lived experience of albinos, disabled and non-Europeans), and of doing so to win prizes – all without having read a single word of my work.
    “As a former Critical Care and Remote Area Nurse who has worked extensively across Indigenous Australia and with differently-abled people, as a former science journalist, as a full-time writer for television who is required to research constantly during his working day, who has spent years researching this particular book, and who has reached out to you as part of that process, I respectfully ask that you engage with me on this topic or allow me right of reply. If you feel unable to do either, I would respectfully ask that you at least refrain from further vilification of me, my work, and my publisher.

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