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

Radio segments & lists of autistics

I’m flat out working on my thesis right now but thought I’d chuck up a blog post with a link to a couple of radio segments I’ve done lately – one with Laura Cheyne for 2ser’s Think: Health on how the media marginalises disability, and one with Swetha Das and Maddison Connaughton for FBi Radio’s Backchat, on the NDIS and the ditching of the Medicare levy.

I’ve also been featured in a couple of excellent lists of autistic writers, artists, & activists on the heels of Autism Bewareness Month – one over at Rooted in Rights, compiled by the inestimable Alaina Leary, and one compiled by Anomalous Press. The latter includes the loveliest description of my work I’ve ever read:

Robin M. Eames’ work explores the mythic and the personal. But it’s in the fissures, the spaces in-between, where their art finds purchase. Here it grows and spreads, providing shelter, nourishment, and encouragement for other marginalized disabled people to continue on.

I’m currently working on a very exciting project with Alice Wong for the Disability Visibility Project, so keep an eye out for that! I’ll post details here when the project goes live.

Love & solidarity as always x

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.

 

 

 

HOW TO MOURN YOUR DEAD

The Rhysling nominations deadline has been extended by a month, to March 15. I realised while checking which poems of mine are eligible that HOW TO MOURN YOUR DEAD is only available online in .pdf form, so I have reproduced it here for the sake of accessibility.

I wrote this after last year’s Disability Day of Mourning vigil, for which I will again be the Sydney site coordinator in 2018 (details forthcoming). It was published in Honi Soit in March and reprinted in AFTER SAGAMIHARA, a zine commemorating the first anniversary of the Sagamihara massacre.

My other Rhysling eligible poems are CRADLE THE SEED and WIND HOWLS/BATTLE COME DOWN, AFTER THE CLASH.

Content note: filicide, ableism, explicit violence.


 

HOW TO MOURN YOUR DEAD

 

how to mourn your dead:

gather the candles. find a flame to light them with. look deep inside your heart. fuel yourself with butane fear passion and pride. remember that you know how to burn. gather the candles.

gather the cripples. they will walk and wobble and wheel their way to you. do not worry if your halls are empty. they are full of ghosts. gather the cripples.

gather the names of the dead. the ghosts are with you but they do not know their own names. the ghosts are with you but they do not know where they are buried. the ghosts are with you but they have not been put to rest. james lloyd age 4 shot by his mother. jeni cazares age 3 months head smashed by her mother. janet cunningham age 43 hacked to death with a hatchet by her father. dorothy cunningham age 62 hacked to death with a hatchet by her husband. gather the names of the dead.

gather your breath. you will need it. there are so many names and so many deaths. fill your lungs with love and flame and fear and fury. fill your lungs with oxygen and poison and clear water and sunlight. remember that you have gone without breath before. speak the names and the deaths. hannah carroll age 6 burned with bleach by her brother. trevor horn age 8 life support disconnected by a hitman hired by his father. tracy latimer age 12 gassed by her father. michael messenger newborn died after his father shut off his ventilator. danielle tucker age 3 pushed down a flight of stairs by her adoptive mother. gather your breath.

gather your courage. you are not afraid of ghosts. you are not afraid of the dark. look to your candles. remember that your heart is burning low and hot. do not falter. speak the names and the deaths. pierre pasquiou age 10 pushed into the sea by his mother. daniel leubner age 13 burned alive by his mother. lillian lellani gill age 4 strangled by her adoptive mother. cassandra killpack forced to drink water by her parents until she died of water poisoning. terrance cottrell jr age 8 suffocated by church leaders attempting to exorcise his autism. summer phelps age 4 drowned in dirty water by her stepmother. james many white horses age 2 abused and neglected by his mother. alex spourdalakis age 14 poisoned and stabbed by his mother and godmother. elisa manrique-lutz age 11 poisoned by her father. martin manrique-lutz age 10 poisoned by his father. gather your courage.

gather the forgotten. look to their ghosts. promise them that they will be remembered. baby doe newborn denied medical treatment by his parents. baby mckay newborn head bashed against the delivery room floor by his father. female name unknown age 33 shot by her father. baby C age 5 months smothered by her father. B. L. age 13 months shaken to death by his father. unknown baby girl age 6 months drowned by her mother. infant girl newborn buried alive by her father. yu age 16 months poisoned with pesticides smothered and thrown off a bridge by his father. unknown male age 4 stuffed into a refrigerator by his parents and frozen to death. zhang (first name unknown) age 7 thrown from a 9th storey window by his mother. gather the forgotten.

gather your joy and your grace and your heaven and your forgiveness and your harmony. remember that you are surrounded by those you love and who love you. joy martin age 69 given a lethal dose of morphine by her daughter. grace carlson age 13 poisoned by her mother. heaven woods age 5 beaten to death by her mother and her mother’s boyfriend. forgiveness sibanda age 3 beaten by his father. harmony carsey age 2 neglected and abused by her mother. gather your joy grace heaven forgiveness harmony.

gather the candles. kill the flames. gather the cripples. kiss your lover and embrace your friends. gather the names of the dead. put them to rest. gather your breath. breathe deep and keep breathing. gather your courage. gather the forgotten. do not forget. gather your joy grace heaven forgiveness harmony. this is how you mourn your dead.

 

MELANCHOLIA

I have a blackout poem out in Streetcake Magazine today!

It uses the text of Robert Burton’s Last Will and Testament, contained in the front matter of The Anatomy of Melancholy, What it is: With all the Kinds, Causes, Symptomes, Prognostickes, and Several Cures of it. In Three Maine Partitions with their several Sections, Members, and Subsections. Philosophically, Medicinally, Historically, Opened and Cut Up, first published 1621.

The poem and its transcription are reproduced below.

 

melancholia


 

Cui vitam dedit et mortem

Melancholia

 

Azure                   a crescent

death,                 following

casualties to which our life is subject

our                   unsettled states

have

perfect

adventure     of which I am ignorant

First

whensoever

I make

Legacies out of

specified

life                             Lady

if he be not

of the Ground                 I give

equally

other

days                                                                   I

long   to

bestow

purpose

to the

grave

perpetual

 

to redeem

my

remembrance

I desire

to be

where she is buried

besides                         I die

till then

 

Disability Day of Mourning fundraiser

fight

Image: a black shirt with text in light blue and bright red, reading MOURN FOR THE DEAD, FIGHT LIKE HELL FOR THE LIVING, a quote from Mother Jones.

I’m volunteering as Sydney site coordinator for the Disability Day of Mourning again this year, but I need some help to cover the costs of venue hire, public liability insurance, and printing event materials.

If you can, please consider buying a shirt (or a hoodie, sweatshirt, or tank top) to help cover the costs involved. There’s an option to add a donation to the cost of the shirt if you’re feeling especially kind. They come in black, charcoal, navy, indigo, and purple.

Link to the Bonfire campaign here: Disability Day of Mourning

Alternatively, if you hate wearing clothes but would still like to help out, you can send $$ via paypal.me/robinmarceline.

Crip love & solidarity 

In the past five years, over 550 disabled people have been murdered by their parents, relatives or caregivers.

On Thursday, March 1st, disability communities in Sydney and around the world will gather to remember the disabled victims of filicide – disabled people murdered by their family members or caregivers.

In the year since our last vigil, our community has lost 100 more people to filicide. These are just the cases that we are aware of – since we began monitoring this issue, we learn about more murders every week. The total number of deaths is likely higher than the amount that reach the media. This problem is made worse by irresponsible news coverage which presents these murders as the sympathetic acts of loving and desperate parents, by a justice system which often gives a lighter sentence to a parent who kills a disabled child, and by the dangerous cultural prejudice that says a disabled life is not worth living.

Media coverage and public discourse about disability filicides frequently justifies them as “understandable” and sometimes “merciful”, rather than appropriately condemning the crimes and those who commit them. If the parent or caregiver stands trial, they are given sympathy and comparatively lighter sentences, if they are sentenced at all. The victims are disregarded, blamed for their own murder at the hands of people they should have been able to trust, and ultimately forgotten. And then the cycle repeats.

But it doesn’t have to.

For the last six years, the Autistic Self Advocacy Network, ADAPT, Not Dead Yet, the National Council on Independent Living, the Disability Rights Education & Defense Fund, the American Association of People with Disabilities, and other disability rights organisations worldwide have come together to send a clear message that disability is not a justification for violence. We read the victims’ names, see their photographs, and gather what information we can about their lives.

We hold the Day of Mourning vigils to draw attention to the violent injustice faced by disabled people, to commemorate the lives of victims of filicide, and demand justice and equal protection under the law for all people with disabilities.

Find your local vigil site here: Day of Mourning Vigil Sites

View the online Disability Memorial here: Disability Memorial

NOTHING ABOUT US WITHOUT US