This week’s interview is with Nalini Hayes, one of the contributors to Invisible, and anthology about representation edited by Jim C. Hines. Over here at Geek Girl in Love we’ve invited the contributors of Invisible to share further thoughts about how representation in genre is important to them. In her essay, “Evil Albino Trope is Evil”, Haynes talks about how representations of people with albinism have affected her life. Haynes is also the editor of Dark Matter Zine. My questions are in bold, her responses are in regular type.
Are there any media or literature portrayals of people with albinism that “get it right?”
I haven’t read or seen any portrayals of people with albinism that “get it right” so far although some people have recommended literature that I’ve added to my to-be-read list.
The best portrayal of an albino I can think of is Michael Pryor’s The Extraordinaires; his albino is a gutsy intelligent female protagonist teamed with a boy who has his own point of difference. The reason Michael’s albino hasn’t “got it right” is that she uses scientific gadgets – like special glasses – that fix her eyesight. This is problematic because people assume that, if I’m wearing glasses, my eyesight is fixed. It isn’t. Glasses can’t fix or replace the missing bits in my retina*.
There is a perception out there that science should be able to fix everything, either with glasses or surgery. It’d be great if someone could write an albino accurately, without magically healing the character, to help people understand this is real and it can’t be fixed. Not with current medicine, anyway.
*For a more technical explanation see Wikipedia. My eye conditions include macular hypoplasia (no fovea and an under-developed macular due to insufficient pigmentation), photophobia, nystagmus, astigmatism, iris transillumination and floaters; all of which are caused by albinism, either directly or indirectly. (My floaters developed very early, apparently caused by the nystagmus that was caused by the albinism.)
How has living with albinism shaped your thinking about people with other forms of disabilities?
I grew up knowing I had a disability but I refused to accept I was disabled until 2005 when workplace bullying based on disability discrimination and refusals of disability access destroyed my career. Until then I tried to pass for ‘normal’. This ‘passing’ was also aided by the minimal contact I had with other people with disabilities.
People with disabilities can be quite disconnected from the community, from each other. We’re not a people group; we often grow up in families where we’re the only one, so isolation can be an issue.
I’ve seen communities develop and people come together over a period of time, aided by increased access to public transport (particularly for wheelchair users). Government funding for programs has helped develop communities and bring people together in programs to an extent although the usual focus is either for people with physical disabilities (wheelchair access) or intellectual disabilities.
Even when I finally started to accept that I didn’t just have a disability, that I am disabled, I found myself isolated in Adelaide. The Royal Society for the Blind was awesome in trying to help me find visual aids (that I couldn’t afford) and with programs to get people together, but most people with vision impairment are elderly. I didn’t know of any program or organisation that brought together people even remotely close to my age, people who were still of an age to expect to be in the workforce.
In 2007 I heard about Reins, Rope and Red Tape, a disability arts advocacy program run by Arts Access in South Australia. I applied and was accepted for the second semester program.
Reins, Rope and Red Tape was a program run by people with disabilities for people with disabilities. This was an eye-opener. I made friends, all of whom had disabilities and all of whom were different in the challenges we faced. We learnt everything from the hierarchy of disability (which reflects the emphasis of government funding for various disabilities) to disability advocacy action in various countries.
One of the worst things about leaving Adelaide was leaving those friends behind. Afterwards I learnt Arts Access and the (separate) disability library/centre had both been defunded so these programs and focal points for people with disabilities vanished.
It was my disability that brought me in to that program, that gave me the opportunity to make those friends. It was my disability that made me acutely aware of the fracturing of the disability community as funding dried up and programs closed.
These days most of my contact with people with disabilities is via facebook. I have some kick-ass facebook friends out there rattling cages, moving and shaking for change. I have some other facebook friends I’ve never met that I just want to hug, to say ‘thank you’ and to break down some gates – like the ones withholding catheters when my friends need them.
Some of the most awesome people on this planet have disabilities. Some of the people who suffer the most in our society have disabilities. It’s a two-edged sword: enlightenment comes with great empathic pain as I see people suffer.
What would you like to see change in our culture to make it a more equitable environment?
If people really truly understood that there are two kinds of people in this world – the disabled and the not-disabled-yet – and that the karma fairy will come back to bite them, THEN I believe we might see some genuine change.
If you had total control over the filming of any book, what would you film, and why, and who would you cast?
I’d film the Children of the Black Sun trilogy by Jo Spurrier because it is the best portrayal of disability, gender issues and society combined that I’ve read. Once Isidro, one of the central characters, acquired his disability, I expected him to be magically healed or to disappear from the story with only a cameo appearance at best. Not only does neither happen, Isidro continues in this story with a totally convincing disability – his crushed arm causes him immense pain, he engages with the issue of ‘to amputate or not to amputate’ and every time he performs a task he has to work around his disability. No other author I’ve read is so convincing in a portrayal of disability. While I’m not physically disabled, I suffer headaches from eyestrain and bright lights; Isidro’s pain and work-arounds are totally convincing to me. Isidro doesn’t suddenly get up and use two hands like characters who’ve been shot in movies.
Not only that, the women characters are awesome. Several central characters provide different viewpoints including experience of an equitable polygamous society and a contrasting, more traditional monogamous society where women are subjugated. There’s a truly three dimensional villain whose acts are truly evil yet he becomes a – somewhat – sympathetic character. There is romance with complications.
Basically, Children of the Black Sun HAS IT ALL. (Note: the 3rd in the trilogy is in my TBR pile.)
Who would I cast? I’d cast an actual person with a disability as Isidro. SFX could cover him up until the point of his injury and then he’d be the most kick-ass believable disabled character on screen. Apart from Isidro, I’d cast actors oozing talent who genuinely represent the various ethnic groups relating to the characters: Siberians, Arabs and the like.
I’d get the crew from Boy and What we do in the shadows to work on it so it wouldn’t be some Hollywood clone. It would be the most epic, the most awesome movie ever.
What draws you to science fiction/fantasy?
When I was very little I think it was the adults around me reading and watching science fiction that started attracting me to science fiction. I remember hiding behind my uncle’s chair watching Doctor Who.
When I was maybe 4 or 5 I found a book of poems by C J Dennis in a corner store and my father bought it for me. He read ‘The Triantiwontigongolope’ to me; I remember laughing, saying it was silly. He challenged me to think about a world where the grass was purple and the sky was bottle green, to really think about it. I did.
‘Could I belong there too?’ I asked.
After a pause he replied, ‘Yes.’
From that day onwards I loved and adored that poem, learning it by heart.
Science fiction and fantasy offers the promise of escape from this world and the possibility of being accepted or fixed in some other time or place. I don’t see myself in the worlds I read or watch so, these days, I build mental walls to protect myself from the albinos and albino-types I see in books and on screen. Instead I try to find little things to identify with or hope for healing for some other ‘me’ in generations to come.
How has being part of an online community affected you?
It’s been very mixed. I have very few friends here in Melbourne; I count ‘friends’ as people who I at least meet for coffee. The online community is my social life. Some people are supportive; those people are like diamonds in the mud. They’re worth picking up and treasuring! Others, not so much. I’ve learnt the value of the ‘block’ button, not to visit certain websites and never to read the comments. Again, I’ve built walls to protect myself.
This year has been a year of building bridges and reaching out to people who value diversity. It’s been a year of growth. Because of studying at university, it’s also been a year of challenge and change. How do I balance the needs and wants of the community – especially the community that visits Dark Matter Zine – with the advice of lecturers and my desire to build a career? I’m walking a tightrope; I’ve never been good at balance exercises. My yoga ‘tree’ is AWFUL.
I’m looking for a way forward for my life and my career. I feel like Gretel after the bird ate the breadcrumbs. I’m hoping that the online community may light the path to some kind of purpose and goal, a means of making a genuine contribution.
What motivates you to put so much work into your website?
After losing my job at CNAHS (Dept of Health in South Australia) I looked for volunteer work to get a reference to find paid work. It’s surprisingly difficult to get volunteer work as a person with a disability, especially because I need disability access for low vision.
In 2010 I edited one issue of a zine for a club in Melbourne before being told my services were no longer required. That one issue gave me insight into the enormous potential of a zine. An online zine had similar huge potential with no outlay of money, hence the online-and-not-printing part of Dark Matter Zine in the beginning.
As Dark Matter Zine took on a life of its own, it took over my life. Demonstrating skills and dedication alongside a strong work ethic has to be good groundwork for getting a job, right?
Dark Matter Zine runs on WordPress and has a social media presence so the technical aspects of running both should demonstrate sale-able workplace skills, right?
Dark Matter is still online, it’s still not printed (usually), but these days it’s grown so big we have to pay a hosting service for a small business package. Donations are few and far between, not nearly covering basic running costs. I need better equipment to do a good job – like a decent camcorder. I had to discard video of a launch because the sound and visuals were so very, very bad. So why am I doing this?
My mentor in the Willing & Able Mentoring Program told me Dark Matter won’t help me get a job in the publishing industry. Challenges like this shake me to the core – what else can I do to convince people I have skills and abilities? – but they also reinforce that Dark Matter Zine isn’t just about getting a job. It’s become a part of my life, it’s my baby that I’ve grown.
One thing of which I NEVER tire is talking to creative people. I love the interviews and panels I’ve had the privilege of running as part of Dark Matter Zine. I love hearing about creative people’s loves, their journeys, their insights. I love the fact that, in my own small way, I’ve made a bit of the ‘convention experience’ accessible to those for whom conventions are not accessible.
Recently a fellow student commented that a Penguin employee had been reviewing books on her blog but, after starting work at Penguin, she was told she couldn’t do that anymore. That challenged me. While I love losing myself in a good book or movie/TV program and I enjoy sharing reviews, I confess I get “all reviewed out” at times. In contrast, I love talking to creative and interesting people. Now I’m concerned that, if I’m successful and get a job in the publishing industry, I’ll have to give up Dark Matter Zine. It’s a dilemma.
So, why am I putting so much work into my website? It started out as a means to sell myself to an employer. Now – I think it’s an addiction.