What To Say When A Biped Asks Why You Can’t Walk On Yr Feet Legs, And Other Awkward Questions

Q:

“What happened to you?”
“What happened to your legs?”
“What’s wrong with your legs?”
“What’s wrong with you?”
“What’s the [mobility aid] for?”
“What’s with the [mobility aid]?”
“What did you do to land yourself in that thing?”
“Permanent or temporary?”
“So… car accident?”
Etc

A:

  1. “Termites”
  2. “Nothing happened, I was born and it got worse”
  3. “Why do you ask?” + repeat ad nauseum
  4. “Sorry, didn’t catch that” + repeat ad nauseum
  5. “Me legs just fell off one day” (especially good if you still have legs)
  6.  “Me legs were eaten by sharks” (see above; important to specify that multiple sharks were involved)
  7. “What legs?”
  8. “I don’t like to talk about my medical history”
  9. “I don’t like to talk about my medical history with strangers”
  10. “I don’t like to talk about Fight Club”
  11. “I don’t believe in talking about my medical history before marriage”
  12. “Oh my God, Karen, you can’t just ask someone why they’re disabled”
  13.  “I could tell you, but I’d have to kill you”
  14. (to “what’s the stick/cane/crutch/walking frame for”) “For walking”
  15. (to “what’s the [mobility aid] for”) “For mobility”
  16. “That’s a weird question”
  17. “That’s a bit of an intrusive question actually, I’m not comfortable talking about it”
  18. “I know you don’t mean to be rude but that’s a bit of an awkward question and I’d prefer not to answer”
  19. “My parents shagged”
  20. lemon scream
  21. Feign ignorance then look down at your mobility aid & say “oh where did that come from”
  22. “I used to be an adventurer like you, then I took an arrow to the knee”
  23. “What up I’m Jared I’m 19 and I never fucking learned how to walk”
  24.  “BEES?????????”
  25. Just stare at them in silence and then very slowly raise your finger to your lips and say “shhh”
  26. Just stare at them in silence and then very slowly raise your finger to THEIR lips and say “shhh”
  27. Just straight up start belting out the 1986 hit single “Don’t Stand So Close To Me” by the Police
  28. Just straight up start belting out the 2011 hit single “Born This Way” by Lady Gaga
  29. “Tragic drop bear attack”
  30. “Tragic masturbation accident”
  31.  “Oh no this [mobility aid] isn’t mine, I’m just minding it for a friend” + then start laughing but with kind of an edge to it then gradually move away from them while continuing to laugh
  32. “Oh, it’s, um, hmm, long story, I don’t know it’s uhhhhh it’s weird to explain, uh it’s my ? joints ?? it’s ? a genetic thing?? I’m ? connective tissue disorder” (I don’t actually recommend using this one but in the spirit of transparency it is my usual response)

Other good responses

33. “Died in the war” (via my mate Paul)
34. “Really bad sex swing accident” (via someone called Lorna)
35. “I don’t like to talk about The Incident” (don’t remember where I heard this one)
36. (re: a prosthetic leg) “I got really into pirates a few years back” (via this person’s dad)
37. (in response to intrusive strangers) “I’m so sorry, obviously we’ve met before but—” sheepish laugh “—I’m afraid I don’t remember your name.” (via this person on Twitter)
38. (in response to “why are you in a wheelchair”) “Why aren’t you?” (via this person on Twitter)
39. add yr own in the comments. Have fun xox

 

QUEERING CRIP, CRIPPING QUEER

QCCQ Cover

Rainbow collection of disability symbols under text reading QUEERING CRIP, CRIPPING QUEER, workshop facilitated by Robin Eames.

I did a workshop today at the University of Queensland for the Queer Collaborations conference, titled QUEERING CRIP, CRIPPING QUEER.

A recording of the workshop is available here (Auslan interpreted) and the slides can be accessed here.

Love & solidarity xx

On the movement of bodies, or, the transgender celestial

I have a poem in the latest issue of Voiceworks, #111, Riff. This poem is a lot of things: a love letter, an exercise in surreality, and a conversation between binary and nonbinary forms of trans identity. It draws on ancient Sumerian, Greek, and Egyptian astronomical theories, including those of Anaxagoras, Anaximander, Aristotle, Empedocles, Thales, and Ptolemy.

You can buy the issue here.


 

my body is a disc floating on an endless ocean

gently orbiting the distant island of your body

 

daylight reigns over my body and night over

your body black and absent of suns or stars

 

you are an immense vault studded with tiny

points of perfect light in which i am enclosed

 

the surface of my skin is much colder than

yours which is formed out of blazing metal

 

your body is a binary system while my body

continues to resist all binary classification

 

i am growing into a great old oak tree whose

questing branches twine around and into you

 

my body is no longer capable of sustaining life

and yet is still capable of sustaining your body

 

i retain my own field of gravity which is several

times heavier than the lighter gravity you exude

 

i am suspended in endless space watching you

plummet inevitably into a vast and infinite void

 

your body is a chariot wheel of mist-shrouded

fire encircling the hollow cylinder of my body

 

my body revolves not around the sun as initially

thought but in fact revolves around your body

 

the death of my body approaches rapidly but i

have every hope that your body will live forever

 

i am constructed from four elements while you

are formed of a single fifth and mythic element

 

you are a quintessence of luminiferous aether and

i simply consist of classical earth air water and fire

 

your existence is a scientific marvel while i am

considered to be a mathematical impossibility

 

my body is doubted by philosophers of antiquity

whose texts questioned the veracity of your body

 

unbeknown to many my body is not a flawless

sphere like yours but rather very slightly elliptical

 

Accessibility

A couple of people have noted that they’re having difficulty reading my posts because of the lack of contrast. The font, colour, and contrast settings on my site are based on my own access needs (I’m photosensitive and prone to migraines), but if you would like to read my posts in higher contrast with a dark font on light background, you can do so at the WordPress reader here.

I’m going to ask around and see if I know anyone who can help me sort out website toggles for colour, contrast, and font size, because multimodal access is important!

Love & solidarity
robin

A note on language

The language we use around disability is important. One of the schisms in the disability community is around identity first vs person first language, i.e. “disabled person” vs “person with a disability”. Lots of us have strong preferences for one over the other.

Usually when we have a preference for particular phrasing, we have good reasons for it. Many disabled people do use identity first language for ourselves, in preference over person first language. Often parents and clinicians/sector workers prefer person first language. There’s no real community consensus on person first vs identity first, so in itself this isn’t necessarily a problem, but it becomes a problem when nondisabled people take it upon themselves to police the use of language about a community that they do not belong to.

(Imagine, if you will, that it was very common for male parents of daughters to insist that it was offensive to call women “women”, and that you should instead call them “people with womanhood”. Or for straight parents of gay children to insist that people should say “people with gayness”. And in response to the protests of gay people, to respond: clearly you’re not as gay as MY child, you couldn’t possibly understand homophobia as well as I do as a straight parent…)

Autistic people in particular express a STRONG community preference for identity first over person first language. This is not a matter of individual aberrance. Overwhelmingly we prefer to be referred to as autistic people. Some people do prefer to be called “people who have autism” or “people with autism”, but these people are statistically in the minority. You should absolutely respect their language preferences too, but it is better to default to “autistic” or “on the autism spectrum” if you are going to default to anything. If you are speaking about an individual, either take your cue from the language they use to describe themselves, or simply ask what their preferred terminology is.

Deaf people also tend to prefer identity first language, and culturally Deaf people often use a capital D to distinguish between Deafness (Deaf culture) and deafness (physiological hearing loss). Capital-D Deaf people often do not consider Deafness to be a disability, which is why you will sometimes see the phrase “Disabled and/or D/deaf”.

Depending on the specific person, respectful usage might be either “disabled person” or “person with a disability”. In my experience the people around me tend to prefer the former, or the use of both interchangeably. There are lots of reasons for this. One is that “disabled” is an adjective like any other, and we do not feel the need to separate ourselves from our disabled identities because we do not see being disabled as necessarily being a bad thing, and we do not think that “disabled” automatically cancels out the “person” in “disabled person”. Another is that it invokes the social model of disability (i.e. that we are disabled by our environments rather than by our bodies, or in other words: in capitalist Australia, society disables you!) You should not use “disabled” as a noun (i.e. “the disabled”); it is an adjective or a verb.

The notable exception is intellectual disability — respectful terminology here is “person with an intellectual disability”, “person with Down Syndrome”, and so on.

There are other areas where person-first is more respectful — for example when referring to specific conditions, such as people with spinal cord injuries (as opposed to “spinal cord injured people”), people who have connective tissue disorders (as opposed to “connective tissue disordered people”), people with muscular dystrophy (as opposed to muscular dystrophied people), people who have cerebral palsy (as opposed to “cerebral palsied people”), people who experience chronic pain (as opposed to “chronically pained people”). Most of the time the grammar follows fairly logically. This is also preferable to referring to us as “patients” (we aren’t always) or as “suffering from [xyz condition]” (unless that condition is ableism, in which case yes, we are all suffering. Badly.)

There are also different implications across different languages. Some multilingual people may use different terminology depending on what is standard in their language or culture.

Person-first language initially emerged out of disability activism, partially as an attempt to move away from terms such as “handicapped” and “special needs”. Some older activists prefer person first language for this reason. On that note I have never met a disabled person who actually wanted to be referred to as “handicapable”, “differently abled”, “diffabled”, “diversabled”, etc. If you meet a disabled person who says they prefer this language then please use it for them. I am not one of those people, and if you use one of these terms about me I will assume that you are either 1. making a joke or 2. have never actually met a disabled person. In either case we will laugh and move on and hopefully you will never use the phrase again.

Lots of media guidelines for respectful terminology are developed in consultation with the disability sector (i.e. largely abled service providers) rather than with the disability community. So you should take most of them with a grain of salt. Take a second to think about the language you use. If a guideline recommends to say “wheelchair user” rather than “confined to a wheelchair” or “wheelchair-bound”, you can probably figure out why that is. (For the record it is because wheelchairs are mobility aids, not prisons. They help us get around, they don’t prevent us from doing so.) On the other hand if a guideline recommends to say “person with amputeeism” rather than “amputee” in order to “separate the person from the disability”, then you might want to check in with your local amputee first.

If you research person first and identity first language you will largely find work focussing on autistic experiences. This is probably because the autistic community is perhaps where the schism is widest. Autistic people care a lot about our preference for being called autistic, and “autism parents” are very vocal about their preference for calling their children “with autism” (and correcting other people on their language usage).

Personally I prefer to be called autistic and would be deeply uncomfortable with being called a “person with autism” or “person diagnosed with ASD”, though all are technically accurate. “Person who lives with autism” sounds to me as if Autism is a weird spectre haunting my wardrobe. I am slightly less uncomfortable with “has autism” if it is used in the sense of “Robin has autism” as opposed to “Robin is a person who has autism”, but I am still not a huge fan of either.  I am pretty fine with “on the autism spectrum”. I’m not especially fond of “Aspie” because Hans Asperger was a Nazi, though lots of autistic people do like the term. I don’t like to be called Aspergic or a person with Asperger syndrome because 1. aforementioned Nazism and 2. I was never diagnosed with Asperger’s, and it no longer exists as a diagnostic category.

I prefer to be called disabled but don’t mind occasionally being called a person with a disability. I do mind being told that I must refer to myself as a person with a disability, and if a nondisabled person is using the phrase “person with a disability” exclusively then it reads as a little out of touch. I prefer to be called someone who is intermittently nonverbal rather than someone who is dumb or mute. I am fine with being called Mad, neurodivergent, neurodiverse, mentally ill, person with mental illnesses, or person with psychiatric disabilities. Other people will have very different preferences to myself on this; much of the neurodivergent/Mad community strongly opposes the pathologisation of neurological variation.

There are some words that I use about myself (often jokingly) that I prefer other people not use, or use sparingly, or use only if they also identify with those terms. Generally I am fine with being called a crip. It might depend on the context. “Robin is a crip activist” is fine. I sometimes refer to myself as a cripple, but generally prefer not to be called this by other people unless they identify with the term themselves (the exception here is very old friends who have learnt my particular brand of dark humour). I do not like to be referred to as crippled, or as experiencing “crippling” anything. For me, the point of reclaiming “crip/cripple” is to take back the harmful power of these words and embrace their invocation of identity. Using “crippling” as a verb defeats this purpose and returns it to the implication of destruction and worthlessness. Generally I would advise using “disabling” or “debilitating” in place of “crippling”.

I have explained my own preferences to give a sense of the variation around different terms, and hopefully to shed light on the implications of these words, and how they might be received. You should not assume that my preferences are everyone’s preferences. Where I have referred to communities, I have tried to accurately convey the feelings of my communities as I understand them; where I have referred to my own feelings, I mean exactly that.

A lot of the time it’s about nuance, and unfortunately there are no hard and fast rules. It might seem arbitrary and difficult from the outside, but no one’s going to beat down your door and arrest you if you use the wrong words. I just probably won’t answer your request for an interview. And I might think you’re a bit of a dick. Or I might go away with a slightly queasy feeling, and feel a bit sad and alienated for the rest of the day. Ultimately the point of all of this is making an effort because we care about each other. All I can ask of anyone is that you be willing to listen and learn. It’s okay to make mistakes, but try not to keep making the same mistakes over and over.

Language matters. Equally, however, it is important to remember that commitment to disability justice and liberation is about more than just style guides and lists of forbidden words and phrases. The point is not the words and phrases themselves, but the ideology underlying them. I have been denied essential services because my doctor at the time told me “I know that your disability is permanent, but I’m going to mark it down as temporary, because I don’t want you to think of yourself as disabled“. I don’t know if this anecdote is an argument for or against identity first language, but either way the problem was not the words my doctor used but the logic beneath them.

At the end of the day you should follow an individual’s preference — but it’s also important to ensure that your default phrasing is as per the preferences of the community itself, not the preferences of our parents or doctors.  The only way you can know what a community’s preferences are is to listen to that community. Listen to disabled people, not just disabled individuals. Don’t correct people on the language that they use to describe themselves. Probably don’t correct people on the language they use to describe other people, unless one of the people they are describing is you. These things change over time. I’m sorry if it’s confusing. Allowing people the capacity for self-definition is important, but it’s not always easy. We’re all just trying to muddle along as best we can.

 

Further reading:
http://autisticadvocacy.org/about-asan/identity-first-language/
http://www.autism.org.uk/about/what-is/describing.aspx
https://ncdj.org/2016/01/journalists-should-learn-to-carefully-traverse-a-variety-of-disability-terminology/
On “Person-First Language”: It’s Time to Actually Put the Person First
https://www.thinkinclusive.us/why-person-first-language-doesnt-always-put-the-person-first/
http://ncdj.org/style-guide/
http://cdrnys.org/disability-writing-journalism-guidelines/
https://ollibean.com/person-first-language-and-ableism/
https://thebodyisnotanapology.com/magazine/i-am-disabled-on-identity-first-versus-people-first-language/
https://www.bustle.com/p/what-is-identity-first-language-should-you-use-it-74901
http://autismmythbusters.com/general-public/autistic-vs-people-with-autism/jim-sinclair-why-i-dislike-person-first-language/
https://autismwomensnetwork.org/failings-person-first-language/

And, for good measure, one last article from a nondisabled parent of an autistic child:
https://www.romper.com/p/5-reasons-why-i-use-identity-first-language-for-my-autistic-daughter-43480