CHRONIC ILLNESS, DISABILITY, & DIGITAL LIFE

I was very honoured to host a podcast episode for the Digital Writer’s Festival recently: Chronic Illness, Disability, and Digital Life, with CB Mako, Gemma Mahadeo, and Katerina Bryant.

You can listen to the podcast or access a transcript here.

When, in an ableist society, one’s access and participation in IRL spaces may be limited and fraught, what possibilities can the virtual sphere provide? Join queercrip activist and artist Robin Eames, and writers Katerina Bryant, CB Mako and Gemma Mahadeo as they discuss their relationships with disability, chronic illness and creative practices in the virtual realm. A conversation about the politics of visibility/invisibility, the body, freedom and autonomy online. Produced by Thanh Hằng Phạm.

From the episode:

Robin M Eames:            What advice would you give to younger emerging disabled and chronically ill writers regarding digital spaces?

CB Mako:                      For me, it would be, if you’re an emerging writer like myself, constantly ask for space. I know it’s frustrating, exhausting, it’s a journey, it’s a long battle, but we have to do that, and we intercept and ask for those spaces. If in terms of technology, if you need a technology to have the space, if there are grants out there that would help us do the work that we need to do, I hope there is. There’s NDIS, but unfortunately, I don’t know how NDIS would work in our area, because it hasn’t rolled out yet. That’s called the National Disability Insurance Scheme, for those who are listening outside of Australia. So, it’s a long journey, and, to have this space with Digital Writers is a good step, it’s a beginning. I hope other producers, other programmers would give us the space as well.

Gemma Mahadeo:        I’d say to emerging writers that identify as disabled, to not be ashamed of stating what your access requirements are, and your voice is valuable. No one will have the perspective that you do. So, it’s going to be really hard, but have faith that you deserve to be heard, and producing the work that you’re producing. Don’t be ashamed about how little or how much you’re producing, because personally, I think health should come first before creativity. You will produce your best stuff when you feel good about yourself, and feel healthy. It took me a long time to learn that one. So, don’t be ashamed of having to step back also, from online spaces or real life spaces, if that’s going to be better for your health, because it might look difficult to other people, but you’re not being difficult looking after yourself.

Katerina Bryant:           For me, I would say, take the time to find what works for you. Don’t rush in creating your work, like you said Gemma. Be generous to yourself, and know that there are communities out there for you, even if you feel as though your situation or your illness or experience of disability is complex, or a little different. There are people out there for you, and there’s art out there for you to both experience and to make.

Robin M Eames:            I suppose my own advice would echo probably all of that, but also, just try not to be discouraged when people are awful, because people can be awful. A lot of the time, it’s not even because they’re being malicious. It’s just because they don’t understand. A lot of the time, it can feel like all we should need to have our needs met, is to be able to be heard, but sometimes you need people to be willing to listen. It’s not your fault if they don’t, it’s not your fault if space is inaccessible for you.

Robin M Eames:            If you can’t access a space, it’s not on you. It is not a reflection on you. It’s all right if your needs are different to other peoples, and it’s up to society to create spaces that everyone can use, and interact with each other. It’s not your responsibility. But at the same time, it can be so powerful to reach out to other people, like both people who don’t experience the things that you’re experiencing, and the people who do, because we can’t understand each other until we’re talking to each other, and listening to each other.

Robin M Eames:            It’s important as well, not just to talk, but to listen and try to keep in mind that everyone, everyone has different needs. We’d be better off I think, if we could approach interaction in the hope that everyone can get their needs met as much as possible.

RESISTANCE AND HOPE

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Illustration by artist Micah Bazant featuring a midnight blue sky with little white stars. Below is a log with mushrooms growing out of it in multiple shapes and colors. “Text reads: Resistance & Hope, Essays by Disabled People, Crip Wisdom for the People, Edited by Alice Wong, Disability Visibility Project.” The ‘o’ in ‘Hope’ looks like a full moon.

I am very excited to finally share Resistance and Hope, an anthology of essays by disabled writers and activists. The anthology is available to read here for free online.

I was very honoured to work as an editorial assistant (and herder of cats) for Alice Wong, the editor of the anthology.

Resistance and Hope is comprised of 16 essays by 17 multiply marginalised disabled people. Contributors include writer and advocate Vilissa Thompson on the audacity of hope as a Black woman; LGBQT advocate Victoria Rodriguéz-Roldán on respectability politics; attorney and activist Shain Neumeier on trauma and survival; ADAPT legend Anita Cameron on the importance of holding hope in darkness; activist Stacey Milbern on caregiving collectives and Medicaid cuts; artists DJ Kuttin Kandiand Leroy Moore on hip hop and disability liberation; writer and artist Naomi Ortiz on self-care and growth; fearless agent of change Talila A. “TL” Lewis on resistance and revolutionary madness; writer and poet Aleksei Valentín on Judaism and disability solidarity; essayist and poet Cyree Jarelle Johnson on autism in a time of resistance; activist and poet Lev Mirov on death, grieving, and survival; autistic advocate and organiser Lydia X.Z. Brown on praxis, accountability, and intracommunity abuse; writer Mari Kurisato on colonial violence and visibility; comic Maysoon Zayid on the strategic fight for our rights in the Trump era; community organiser Mia Mingus on transformative justice and building alternatives to violence; and artist and writer Noemi Martinez on survival and multiple marginalisations.

This is crip wisdom for the people.

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. “It is what it is”
  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. “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

 

QUEERING CRIP, CRIPPING QUEER

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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,
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, 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 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 (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, 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/psychiatric 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”, “debilitating”, or “crushing” 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 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.

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/
https://radicalcopyeditor.com/2017/07/03/person-centered-language/
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

Article out in Junkee on Stephen Hawking

I wrote an article for Junkee about Stephen Hawking and the media reception of his death. You can read it here.

Excerpt:

Stephen Hawking died two days ago. He was an extraordinary and uncommon academic, a scientist with a deep sense of artistry and a wicked sense of humour. And he was a bright fire in the lonely sky of disabled academia.

I am not a scientist. But I am a wheelchair-using academic, and I have a lot of feelings about space; my thesis has “cosmogonies” in the title. Hawking’s work was a joy and his presence in the world was a comforting reminder that people like me belong in academia just as much as any abled person does.

So it is disappointing, and deeply hurtful, to see how abled people are handling the news of Hawking’s death.

Many abled people have created artistic depictions where Hawking’s spirit is seen standing or walking away from his wheelchair. Leaving aside the fact that Hawking was a staunch atheist who described the idea of an afterlife as a “fairy story”, this fundamentally misunderstands the function of a wheelchair in a disabled person’s life.

Hawking is not “finally free” of his wheelchair now that he is dead. His wheelchair is the thing that gave him freedom during his life. The only time he ever envisioned himself mystically floating away into a sparkly cosmos, it was with his chair: go ahead and watch his cover of Monty Python’s ‘Galaxy Song’ if you want to see for yourself.

Read the full article on Junkee here.