New poem out in Speculative City, “ritual”, on personal and cultural neuroses.
You can read it here.
New poem out in Speculative City, “ritual”, on personal and cultural neuroses.
You can read it here.
“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?”
Other good responses
33. “Do you always begin conversations this way?” (via The Princess Bride & this person on Twitter)
34. “Died in the war” (via my mate Paul)
35. “Really bad sex swing accident” (via someone called Lorna)
36. “I don’t like to talk about The Incident” (don’t remember where I heard this one)
37. (re: a prosthetic leg) “I got really into pirates a few years back” (via this person’s dad)
38. (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)
39. “I’d rather talk about anything but that.” (via Captain Awkward)
40. add yr own in the comments. Have fun xox
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
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
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, but rather a minority culture and language group, 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 might not feel the need to separate ourselves from our disabled identities because we don’t consider disability to lessen our worth as people, or because we don’t see being disabled as necessarily inherently bad. I personally don’t think that “disabled” automatically cancels out the “person” in “disabled person”. Another reason is that this phrasing 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! (The social model is not always perfect, but is generally considered a step above the medical model; I’m a big fan of Alison Kafer’s political/relational model.) 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 generally “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 focusing 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” can be 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 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 value the term. (Asperger Syndrome no longer exists as a diagnostic category.) “High functioning” and “low functioning” are harmful descriptors, and difficult to define regardless, especially since “functioning” levels can change according to context or develop over time.
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 (or “person with disability”) — especially given that I have multiple disabilities! 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 a wheelchair user rather than “in a wheelchair”, “wheelchair-bound”, or “confined to a wheelchair”. I am fine with being called Mad, neurodivergent, mentally ill, person with mental illnesses, or person with psychiatric disabilities. Other people will have very different preferences to myself on this; the neurodivergent/Mad community has a lot to say around the depathologisation of neurological/psychiatric variation and how that relates to language.
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 “debilitating”, “disabling”, or “crushing” in place of “crippling”.
I also think it’s best to say the word “disability” rather than avoiding or euphemising around the term. Substituting the word “ability” for “disability” (as in “ability space” or “abilities collective”) makes it sound like the space or collective is a space for abled people. Linguistic contortions like dis/ability, disABILITY and (dis)ability are incoherent to screenreading software, difficult to read as an autistic person, and make it seem as if “disability” is something bad and unnameable. Of course disabled people have abilities, but “see the ability not the disability” doesn’t help me navigate inaccessible environments, it just obscures the format of my marginalisation. If you wouldn’t remove the “dis” from “disenfranchised”, don’t remove it from “disabled”.
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 comes down to 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 lonely for the rest of the day. On a community level it might make disabled people feel alienated or ignored, and it reinforces certain structural hierarchies that depend on disabled people being denied the capacity to define ourselves, and defined instead by those with power over us (i.e. nondisabled people, and the structures of government, medicine, and law). 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 condition 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.
And, for good measure, one last article from a nondisabled parent of an autistic child: