Image description: A five-squares-a-side book-related bingo card with 24 items to check off (the centre square is ‘Free’), titled “Book Bingo, Adult Summer Reading for 2018.”
** Please see edit below. **
Seattle Arts & Lectures, in concert with the Seattle Public Library, has once again put together a book-related bingo card. Here are the categories:
- recommended by a librarian
- fiction
- finish a book you started and put down
- mystery or thriller
- written by an author from another country
- award-winning author
- about the environment
- by an author of color
- recommended by an independent bookseller
- history
- made you cry or laugh out loud
- graphic novel
- author (or character) has a disability*
- takes place in the area where you were born
- memoir or biography
- your best friend’s favorite book
- a SAL speaker (past or upcoming)
- about travel or read while traveling
- outside your bubble
- local author
- LGBTQIA author or character
- poetry or essays
- first in a series
- suggested by a young person
Only one of these categories, “author (or character) has a disability,” has an asterisk denoting what appears to be a qualifying statement. The qualifying statement reads “Celebrating USA Special Olympics Games – Seattle 2018 (July 1-6).” Shelf Talk, a blog run by the Seattle Public Library, elaborates: “Something special is happening in Seattle July 1 through the 6th: The USA Special Olympic Games!1 […] In honor of that event Book Bingo this year features a square for an author or character that has a disability.”2
Think about that for a bit.
First of all, look at the wording: “author (or character) has a disability.” This is the people-first language I associate with the medical model of disability in which nondisabled people are Normal and disabled people are Other.3 Much better to use identity-first language: “disabled author (or character).”
Now imagine the queer and POC squares have asterisks excusing and explaining their presence: To celebrate the Lambda Literary Awards for Pride because, wow, that’s the only time straight people think about queer people, right? Or, In honour of Martin Luther King Day, because, hey, we can afford to give you one day a year. Remember we are 20% of your community; we don’t need an excuse to be included.
A guest post by Carrie Griffin Basas for the SAL blog arguably addresses some of this, though obliquely. She challenges readers to fill 20% of the squares with books by disabled writers or featuring disabled characters, and she offers some great examples.4
Let me see that 20% and raise it. Print out the card and fill in every single square with a book by a disabled writer and/or about disabled characters. (Here’s a list to get you started.) Then send the 100% #CripLit card in. Make clear to SPL/SAL that #CripLit deserves the same attention as other literatures.
Let me use So Lucky as an example: with this one short novel you could potentially tick off nearly half the categories. At an absolute minimum you can tick off 25%:
Image description: Book bingo card with 11 squares checked off: recommended by a librarian, fiction, mystery or thriller, written by an author from another country, award-winning author, recommended by an independent bookseller, made you laugh or cry out loud, author (or character) has a disability*, outside your bubble, local author, LGBTQIA author or character.
But the point of this exercise isn’t selling So Lucky. It’s about helping SAL and SPL remember two things:
- Don’t put together anything mentioning disabled people without consulting disabled people: Nothing about us without us.
- Many of us don’t read books by disabled authors and/or about disabled characters because it will make us feel good for helping those poor Special people. We don’t just read them during special events or during holidays. We read #CripLit because we love it, and we love it because it’s kick-ass, brilliant writing about fascinating characters.
Or as Xena might say, Don’t apologise, Gabrielle. Just improve.
◻︎
** ETA: On Friday, I wrote to SPL and asked for a comment. I explained that I was “unhappy about the way disability is treated in both the card and accompanying blog posts,” and why. I stated that I was sure they had not meant to offend, but that nonetheless the effect was an unhappy one and they might want to look at their language.
Jared Mills responded with a very clear and handsome apology and thanked me for my feedback. “The wording of the square used was based off of our style guides and consultation with the Communications department of the Special Olympics which indicate that people-first language is the preferred consensus, but it sounds like thought on this has been evolving lately. I have forwarded your insights to our ADA Coordinator librarian so that she can assess our style guide after engaging with some of our internal and community stakeholders to look into changing our usage. This sounds like something we should be looking at system-wide to ensure we are having the positive impact intended.”
We also discussed the Special Olympics and the wisdom of relying on an organisatioin mostly (IMO) run by and for nondisabled interests. Since then we’ve discussed a conversation with City of Seattle’s ADA Manager regarding ‘people-first’ language and starting a conversation in the community to see what the general thoughts and feelings are.
So if you have opinions I’d love to hear them!
1 About those Special Olympics. A cursory scan of their website shows a Leadership Team predominantly composed of nondisabled marketing, branding, and corporate liaison folks. There is one disabled person (who doesn’t identify as disabled but, rather, as “a person who has an intellectual disability”) on the list: the Chief Inspiration Officer (I am not kidding). This does not fill me with confidence. See also others’ criticism of the Special Olympics.
2 The vicious-after-dealing-with-yet-another-microaggression-so-not-inclined-to-be-reasonable part of me mutters, “Poor sad crips don’t know they’re disabled. Let’s not tell them. Let’s just edge around the topic delicately: They have a disability, their disability doesn’t have them! They’re Special people who inspire us and make us want to help them out a bit and give them their very own book square! Not that they read, probably, poor things, but we can read about them and feel good. But only this once, mind; only because we’re throwing them a Special money-making inspirational porn party right here in town!” ETA: As I said to Jared, I know this implication wasn’t deliberate—and his email stance confirms this—but it’s startlingly easy to draw the inference. I decided to leave it in anyway, though relegated to the footnotes, just so readers can see just how effectively microaggression can knock a usually rational human being (that would be me…) off-centre. Also, yeah, I just needed to vent my spleen a little.
3 TL;DR: It’s the crip’s fault for being impaired, not society’s fault—not the cultural and built environment that can make life very difficult for crips. SPL informs me this wording was based on their own style guide and in consultation with the Communications department of the Special Olympics. But see edits in the main body of the post: that might change.
4 Basas, too, uses people-first language. Perhaps this, too, is a style guide issue, or perhaps it’s Basas’ preferred terminology. Whatever the explanation, let me be very clear: my quarrel here is not with her; this is an institutional not individual issue.
Nicola Griffith 
You raise a fascinating argument against the People With (condition) linguistic style.
In medical school 15 years ago, the People With… model was explicitly taught to me as the only acceptable way to refer to people’s medical conditions: they’re not a diabetic, alcoholic, hypertensive demented person. They’re a person with diabetes, alcohol dependence, hypertension and dementia. This is meant to remind us that their medical conditions are not personality traits or permanent identifiers. I think it makes sense, in a medical setting, to encourage doctors to think of patients as people, rather than the sum of their conditions. There’s been a huge effort to discourage the old practice of referring to “the pneumonia in room 14” and “the diabetic foot ulcer in room 12,” and frankly some medical providers NEED this level of simple linguistic guidance to avoid sounding like complete jerks.
The modifiers that we were taught MAY be used as descriptors are (mostly) related to identity or living situation: age, race/ethnicity, gender identity, sexual orientation and homelessness/refugee status. So using the medical linguistic rules from my training, it would be appropriate to describe me as a 43 year old white lesbian cis-woman with a history of scoliosis, but it’s incorrect to describe me as a scoliotic 43 year old white lesbian cis-woman. Unless I claim the scoliosis as part of my identity, in which case the medical student writing it down had better note that I am a self-described scoliotic or risk getting chastised by their supervising attending.
Perhaps part of the issue with the “disabled” vs. “people with disability” labels is that one claims it as an identity, the other classifies it as a medical condition. Folks uncertain of their linguistic footing may assume that medical sounding terminology is better, when instead it may feel like intentional “othering” of one’s identity. I’d certainly feel “othered” if someone called me a “person with lesbianism” rather than a lesbian. Disabled may be one of those labels in transition, like being Queer, where the user’s context is everything. I’m happy to identify as queer, or a lesbian, or a dyke, but woe betide the hetero acquaintance who uses any of those terms about me without hearing me use it first. They’d better stick to LBGTQIA+ until they’re well established as someone who knows their queer culture and respects its terminology.
I suspect that for many non-disabled people, the “People with Disabilities” is an attempt to acknowledge that they don’t know whether someone’s disability plays a large role in their identity or is an incidental footnote, (depending on the disability, this may be rather like assuming a POC in this nation has the privilege of ignoring their race) AND that they’re uncertain of someone’s preferences in labelling. If so, the minute they hear someone’s preferred terminology, they should be switching to match the individual’s preferences.
Apologies for the long-winded comment, but thanks for making me think so hard about it! I’ll be paying attention to my own use of these terms, (and whether I am inadvertently othering people) as I see my patients.
@7:33 Not long-winded at all. I really appreciate the medical practitioner perspective and I agree with you in many respects (including, sadly, that some practioners need plain and simple guidance). And, yes, absolutely this is about identity, and Disabled as an identity is still relatively new.
Being disabled still carries so much stigma, and most people (disabled and nondisabled) are still so in thrall to the basic ableist narrative (that being less than perfect physically or mentally makes one less than human), that disabled people who call themselves disabled may still be in the minority.
In this sense, there are many parallels with being queer. Those who can can hide their difference and pass sometimes do in order to live a better/easier life. The label still has so much stigma partially because we don’t see good strong representation of ordinary, happy disabled people. We don’t see representation because those who believe the ableist narrative–including writers, editors, producers, critics–can’t see past it. So perhaps they don’t write the books/screenplays with good representation, or they do and the editors/producers don’t publish them because they don’t fit the stereotype in their head, or they do but the critics/reviewers can’t see past their own image of what disability is and so misunderstand the book/film and give it a wrong-headed review. So the audience thinks: Why would I want to read that?? So they don’t buy it. So the producers/editors don’t make money so they don’t acquire another one. So the writers stop writing them. On and on it goes…
This representation/cultural attitude spin-cycle might be why a hundred years ago queer books were about as uplifting as The Well of Loneliness. Why it took so very long to get past the Coming Out narrative, move beyond the story having to be about being queer, and onto just telling stories of queer characters living their lives. And even now, it can be a bit harder to publish a mediocre novel about a queer character than a mediocre straight character.
In queer terms it took a century or so to shift the culture, and in my opinion story, particularly novels, lay at the heart of it. Novels are empathy machines. Disability culture is moving faster than queer culture did, I think, thanks to social media. But, again, I think it’s story–whether page or screen–that will be the foundation of a new culture. This is why the language of a library system is crucial.
But, yes, in the end identity language is a constant negotiation between systems, cultures, organisations, and individuals. There’s no easy answer except to keep asking the questions and keep talking.
They’re using the Special Olympics as as Style Guide? Even the Paralympics would be problematical (notoriously ableist sponsor organisations with a seat on the board), but the Special Olympics? Yeesh. Intellectually disabled people are fully capable of participating in, and running and leading DPULOs (Disabled People’s User-Led Organisations) and of national level political campaigning, they don’t need to be treated as children.
As for “Special Olympics [says] people-first language is the preferred consensus, but it sounds like thought on this has been evolving lately”, the major group that thinks there’s a consensus around person-first tends to be non-disabled allies (so I guess the Special Olympics and SPL fit the pattern). Within disability we’re much more divided between person first and disabled person, especially with politically aware crips. The US probably has the strongest person first contingent, but a lot of that is allies, not crips themselves. Outside of the US, such as in the UK, person first is often a distinctly minority view.
When you poke into its thinking, person first has definite issues. The core of person first is that a person isn’t just their disability, but lurking behind that is more often than not a belief there’s something wrong with being disabled, so associating a person with their disability is demeaning them, and separating the disability is being “kind” (you could argue there’s a certain thematic commonality with ‘I don’t think of you as black/gay/other minority’). That’s a problem for anyone who doesn’t view disability as a negative, but either of those interpretations are a distinct problem when applied to neurodiversity and the autism spectrum. The entire concept of person first is ludicrous when applied to me (or any other neurodiverse person), because there is no aspect of my life that isn’t affected by my neurodiversity. You cannot reasonably or sensibly separate me from that particular one of my disabilities. And telling me I’m “more” than something that’s an intimate part of every aspect of me? Don’t be surprised if I react angrily!
Even though the autism community has explicitly rejected person first, I’ve repeatedly seen education and medical professionals (mostly American) tell autistic people that they are “wrong” to call themselves autistic, because their professional bodies insist that person first is the only acceptable usage, no matter what disabled people might say. And no matter nothing for us, without us.
The Deaf community has, if anything, even more strongly held views on deafness as a cultural identifier.
And of course disabled person has a specific meaning for those of us who follow the Social Model of Disability, it proclaims our existence as a discriminated against minority, and to deny that is to deny our struggle.
If I was writing something for the US audience I’d use “person first/disabled person” the first time, footnote it to explain the issue, then go with disabled person (my essay, my preference), here in the UK I’d just use disabled person and explain why after the fact if anyone took issue. Talking to people, you find out which they prefer, and use that. It really shouldn’t be difficult!
If the conversation with SPL could use some references from within the community, then a couple of my friends have written potentially useful pieces. Lisa Egan wrote a piece on it for xojane that I think is particularly good. https://www.xojane.com/issues/i-am-not-a-person-with-a-disability-i-am-a-disabled-person, and Cara Liebowitz has one here that references several more sources https://thebodyisnotanapology.com/magazine/i-am-disabled-on-identity-first-versus-people-first-language/
@7:34 Many thanks for the long, thoughtful comment, and for the links, which I hope SPL find useful. I agree with everything you say—but you articulate it more clearly than I could.