How We Write About Ourselves

I've gotten flack for referring to myself as a cripple.  I don't understand disabled people who prefer the term "differently abled", but wouldn't want them to stop using what terms they identify with.  "Disabled" is a decent standby word.

No one should force anyone else to use a specific term for themselves.  If you fall under a certain umbrella of words/terms/phrases, you should be able to use any that apply.  It means not taking crap over whatever people think is best.  You know what you like.

People who aren't disabled can't generally use the words you choose.  The umbrella of a minority group offers the protection to claim the words those outside will never have, even as an ally.  A stranger shouting "cripple" at me on the sidewalk is a jerk, no matter how many times I've said it of myself.
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Disabled/neurodivergent writers are often policed for how we write about ourselves.  Not for just how we identify, but the topics we do (or don't) cover and what the slant is.

The surprising thing I'm seeing, is a fair amount of people criticising disabled/neurodivergent writers, are other disabled/neurodivergent people.  They aren't taking writers to task about inaccuracy or cardboard portrayals.  They aren't boycotting a disabled Jojo Moyes.  They are tearing down phrasing that isn't problematic, criticising how authors (legally, without spam) market their books, what topics are covered... because of what an able-bodied/neurotypical audience is going to think.

While a few rare instances might have a bit of merit (like leveraging disability the wrong way for sales) most do not.  We have become scared to let them (the majority) see inside the iron box of our lives and truths, the secret spots where it is vulnerable... or the fierce, barbed pieces.  We want our tales to garner attention (only a specific kind) then have them stroll away, satisfied by what they glimpsed.

I understand writers pandering to a market and watering down the hard parts.  I understand problematic portrayals giving people the wrong notion, and the disabled readers who won't put up with shoddy literature... from any writer.  I don't understand the need to hide when it isn't your story, to bash what is thoughtful and complex, honest and raw.

Fight when you need to, but figure out why you're fighting.  The opponent might not be who (or what) you're expecting.

Write (and read) on, my lovelies!

Sagamihara: Family

We feel your presence

Gentle rain tickling leaves

Disappears too soon

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Today, I am with my family.  But my thoughts drift towards Sagamihara.  

Did each victim have at least one person who mourned them, who lost something fierce and precious when they died?  Everyone should have someone who would miss them, who knew them personally.  Someone who knows just what the world lost, even when the world doesn't. 

Ableist Language in Dialogue

The majority of the population still thinks words like "dumb" and "crazy" are fine to lob in everyday conversation.  Even a lot of disabled/neurodivergent folks use them without being in the position to reclaim them.  Then, there are some who don't want to use the words because of ableism.

For the writers in the "hell no" camp of using certain words, telling a story without them can become complex.  A character doing something ridiculous in modern times is rarely told he's being preposterous.  A highly erratic protagonist isn't going to be told by each character her demeanor is strange or odd, though it might work for a few characters' interactions.  

Child characters are even more difficult.  Few children know words like "ludicrous" or "off-putting", and probably wouldn't use them if they did.  Unless one avoids putting kids in a situation where they need to address someone (or something) with extreme behavior and/or properties, the writer will need to address it, somehow.

Do writers who see words like "stupid" as ableism give themselves a pass when writing fiction?  I haven't asked every single writer, but a fair amount do.  Especially when writing realistic, modern stories.  It isn't easy to work around words the majority of people use.  It's not as simple as avoiding vulgar language.

But a small section of writers refuse to use those words, regardless.  Some set stories in strange lands with made-up words.  Some don't put characters in a situation where they need to address another's odd mannerisms... at all.  Or place their books in a past where different words are said.  Or, maybe, they use words like "odd", "strange", "preposterous".

It's up to each writer to decide.  

What words do you use?

Uncertainty and the Writing Life

Writers rarely have job security.  There are always other writers hungry for an assignment, or a spot on the bookstore shelf, or a page in that high-paying anthology.  To get in, writers often have to edge each other out, whether we're aware of it or not.

When change happens in a country's government, a natural disaster befalls a region, or an industry suddenly bottoms out, it can cause ripples that affect everything, even writers' careers/options.  People will buy more (or less) books.  Publishing companies will combine (or fold).  Selling rights overseas becomes more complex.
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Often, disabled/neurodivergent people feel turmoil keenly.  Certain government changes could kill (some of) us.  Our evacuation plans for natural disasters can be more complicated.  We are already rooted in contingencies.

It's easier to let our writing careers slide on a "wait and see" because they don't feel vital (excluding those of us who actually pay bills as a wordsmith).  Why worry about writing in the chaos?  Who has the spoons for another worry?

I get it, I do.

But, I contend, writing should be in any plan a writer makes.  Your words matter, especially in uncertainty.  Who will know how things are for you if you won't tell them?  Squeeze in places you can fit yourself and scream, sign in exaggerated gestures, turn up your gorgeous, mechanical voice and curse.

Join writing groups, submit more work, form publishing co-ops with other cripples.  Keep trying to crack any gate locked against us. Amplify each other, support one another.  Don't stop.  Be brave.
We are stronger together.

Stories With a Cure

We all hope for cures for diseases and illnesses that kill people.  No one would shed one tear for the eradication of AIDS or cancer.  But things become more complex when the condition/disability/divergence isn't fatal.

A disability like Cerebral Palsy, for example, has people split.  Some with it say they'd take the cure this second.  Others, never in their lives.  And another group would want it for certain aspects (remove the disabled accent, perhaps) but not others.  It depends.
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In a fair amount of books about disability, the focus is on the cure.  The character with the disability/neurodivergence wants nothing more in the world than to be able-bodied/neurotypical.  Everyone desires to be normal, the author thinks.

An entire tale may focus on nothing but the journey to normalcy, whatever the hell that is.  Which tells disabled/neurodivergent readers:  It doesn't matter how funny, badass, or talented you are, the only worthwhile pursuit is fixing what society sees as wrong.  Not even personality flaws like selfishness trump those stick legs, those stimming hands, clubbed feet, or that impared vision.

But, not all books take the entire plot to cure our plucky disabled/neurodivergent protagonist!  There is often romance, family relationships, swashbuckling!  Wow!  What disabled character gets to do that in a book where a cure for their disability is part of the plot?  One where the potion, shot, or surgery comes at the beginning.  Probably in the first couple chapters.  Definitely before the heroics start because, you know, we're just not heroes (unless it's inspiration porn, which doesn't usually happen in cure stories).
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Though the issue of curing someone's disability/neurodivergence is complex for the individual presented with the choice (even for a great deal of people who'd love a cure), most stories make it seem like an effortless decision.  It isn't.  Because, though our differences aren't everything we are, they are a part which has shaped our very self.  In a world more intent on valuing it's version of wholeness, we need more stories stating that we are whole, no assembly required.

Q&A With Katharine Quarmby (Nottingham Festival of Literature)

Photo of Katharine Quarmby
Credit to Tom Green

You are well-known for your disability advocacy.  How did you come to advocate for disabled people?

There are a number of reasons - as I will say in my speech, I have had chronic migraines myself since I was a teenager, so have quite an intimate knowledge of pain. We also have a rich history of disability within our own family. When one family member suffered (and I use the word consciously) a traumatic brain injury, it become clear during the recovery period that our relative was treated very differently after the injury. I became much more aware of how some people in society view disabled people. That led on to my work on disability hate crime - along with particular cases of that crime where I felt justice was not done. I then wrote my book, Scapegoat: why we are failing disabled people (Portobello, 2011). I also became a co-ordinator of the Disability Hate Crime Network and have served, or continue to serve, on a number of expert committees related to disability. 

What are your favourite books on disability as a topic, theme, written by disabled writers, or starring disabled protagonists?

I think there are some particularly good ones but of course it depends on how one views disability. Do we, for instance, count writers who experienced mental distress? In that case, I would single out Virginia Woolf as one of my favourites. She wrote about war-time traumatic stress, famously, in Mrs Dalloway, for instance. But, crucially, I think she wrote well about the experience of difference in all sorts of ways - sexuality and gender, in Orlando and of course being a woman in many of her books. For me one of the key tests is can you make your writing about difference universal? Does it break down walls? Then there is much of Audre Lorde, who again writes so brilliantly about all forms of difference. Susan Sontag is another key writer, for me. Then there's Hugh Gregory Gallagher, whose books on both the only disabled US President, and then on how disabled people were murdered during the Holocaust, are key texts. But there are so many it's hard to choose. 

You are giving the Keynote Address at The Nottingham Festival of Literature (which runs from the 8th of November through the 13th). How did it come about?

I was asked to do it and gladly agreed as I think this is a crucial time for writers to address certain themes - difference, universality and cultural appropriation.  

Your Keynote (on the 11th of November) is going to focus on portrayals of disability in literature, spanning from the ancient Greeks to modern writers like Jojo Moyes.  That's quite a large amount of time. How did you decide what writers and trends to include?

I drew on some of the research in my first book, Scapegoat, as I think it's important to give a sense of the historical and cultural context in which disability representation sits. I also wanted to look at some modern (and controversial) texts as I think it's important to address current concerns. 

You are also talking about appropriation of disabled culture.  Do you think able-bodied/neurotypical people see disability as its own culture?  Why or why not?  Has the attitude shifted in the past two decades?

I welcome the fact that more writers are including disabled characters in their works. I think it's always important, however, for writers to do their research and be respectful. I think attitudes have shifted - and mostly in a good way, with more disabled people writing, for a start, and some non-disabled writers wanting to write about key themes in disability current affairs.

  

What trends do you see happening in CripLit?  Are they positive?

I welcome CripLit as I feel it asks some very searching questions of both writers and publishers. However, it's important that non-disabled writers do not get the impression that writing about disability is off-limits. Some 83% of people acquire their disability during their lifetime, rather than being born with a disability. Most of us will die, impaired, in one way or another. For me disability, and writing about it, is about humanity itself at a very deep level.

  

In what ways does the publishing industry fail disabled people/writers, in your opinion? Are there ways it is getting things right?

I'm not a publisher so it's hard to say, but it's important that all new writers are encouraged to find 

ways to the marketplace. The test should be whether the writing is good, however.

  

Lately, at least in some countries, there has been a push to include disabled writers in retreats, conferences, etc.  What do you attribute to this push?

I suspect there is a growing awareness that disabled writers are bringing great richness to the mix of diverse voices.  

What role do able-bodied/neurotypical advocates have in the careers of disabled writers?

I think any alliances are good as long as there is respect on either side.  

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Biography:  Katharine Quarmby is a writer, journalist and film-maker specialising in social affairs, education, foreign affairs and politics, with an investigative and campaigning edge. She has spent most of her working life as a journalist and has made many films for the BBC, as well as working as a correspondent for The Economist, contributing to British broadsheets, including the Guardian, Sunday Times and the Telegraph. She also freelances regularly for other papers, including a stint providing roving political analysis for The Economist, where she has worked as a Britain correspondent. 

Her first book for adults, Scapegoat: why we are failing disabled people (Portobello Press, 2011), won a prestigious international award, the Ability Media Literature award, in 2011. In 2012 Katharine was shortlisted for the Paul Foot award for campaigning journalism, by the Guardian and Private Eye magazine, for her five years of campaigning against disability hate. Katharine and her fellow volunteer co-ordinators of the Disability Hate Crime Network, were honoured with Radar's Human Rights People of the Year award, for their work on disability hate crime in 2010.

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A Description of the Keynote Speech:

A MESSAGE FROM OVER THE WALL - KATHARINE QUARMBY 

FRIDAY 11 NOV 7-8.30PM

NOTTINGHAM ARTS THEATRE / NG1 3BE

American author and disability advocate Hugh Gregory Gallagher wrote eloquently of the “land of the ‘crippled”, adding, “a great wall surrounds this place, and most of what goes within this wall is unknown to those outside it. What follows is a message from over the wall.” In this address, Katharine Quarmby will explore the canon of literature to look at the characterization of disability, as a message within both mainstream literature and emerging disability literature. For writing about disability – invisible and visible – is a message about humanity itself, and the stories we tell ourselves about what it means to be human, and to live with impairment.

NOTTSFOL.CO.UK  WARNING:  The website to the festival has a lot of red.  Be aware epileptics, migraine sufferers, etc. 

Disabled/Neurodivergent Literary Links (Part 3)

Please see the Links of Interest tab for a full list of disabled/neurodivergent literary links.

A couple notes before today's post:

1.  The Facebook group Poets and Writers with Disabilities has disappeared after some turmoil within it.  Fear not, there has been discussion of a new group by some capable folks.  I'll keep everyone posted.

2.  There will be a post on Monday.  Katharine Quarmby is giving a keynote address at the Nottingham Festival of Literature on disability portrayals in literature, and has graciously answered some questions for the blog.
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It's that time again!  Another round-up of links for disabled and/or neurodivergent poets and writers is here.  But, unfortunately, I've pretty much run out.  Unless any of you can think of any I'm missing.  Please share!

1.  #LiterarySpoons is a hashtag on Twitter where any disabled/neurodivergent writer can Tweet links to whatever they write, even blog posts!  There is even a "showing" time where everyone can share.  The next one is November 10th.  Remember to use "trigger warnings" when applicable.

2.  #ArtfulSpoons is a hashtag similar to #LiterarySpoons, with the difference being any form of art can be included   I've seen some gorgeous jewelry, lush fabric creations, delicious-looking culinary delights, and more displayed.  The next "Gallery Night" is the 18th of November.

3.  Zoeglossia is a community for disabled writers run by Jennifer Bartlett, Sheila Black, and Connie Voisine.  The only project listed, as far as I can tell, is a retreat program for poets.  But, since they're just getting off the ground, things may expand.  Currently, their Facebook page appears non-operational.

4.  Autonomous Press is a press that wants to further academic access and "promotes the representation of disability and/or disabled voices".  There is also a NeuroQueer Books imprint which "focuses on queer issues, queering, sexuality, gender, or critical response to other aspects of identity (such as race, class, disability) as they interact with neurodivergence and psychological development".

5.  The Writing in the Margins Mentor Program matches up an experienced editor or traditionally published author with an emerging writer from a marginalized group (in this case, writers of color and disabled writers).  The purpose is to get a manuscript prepared to send to potential publishers.  There is no cost, and the application form is straightforward.  Applications are due by November 30th, so don't delay too long.
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Related Posts:  

 Disabled and/or Neurodivergent Literary Links

Disabled/Neurodivergent Literary Links (Part 2)