The zine was compiled by myself, with contributors including Samantha Connor, Quin Eli, Maggie Heynemann, Mizuki Hsu, Beck Kelly, Suzy Keene, Fayroze Lutta, and Wendi Wicks.
Crip love & solidarity,
The zine was compiled by myself, with contributors including Samantha Connor, Quin Eli, Maggie Heynemann, Mizuki Hsu, Beck Kelly, Suzy Keene, Fayroze Lutta, and Wendi Wicks.
Crip love & solidarity,
Subbed in presents ‘how i met your can of mother’ 😊
literally drink in a night of literary readings with performances by:
Bastian Fox Phelan
+ ~secret guest~
the venue and amenities are wheelchair friendly and fully accessible
all ages / alcohol-free
doors @ 5pm
entry $5 / free ibis temporary tattoo upon entry 😎
we’ll also be selling books, zines, art and broadsides by local creators
subbed in meets on the stolen land of First Nations People – the Cadigal Wangal people of the Eora Nation are the traditional custodians of the land. we pay our respects to elders past and present and acknowledge this land was never ceded, sold, or given up
see youse there
This project is supported by the Writing NSW Grants Program, a devolved funding program administered by the NSW Writers’ Centre on behalf of the NSW Government and Arts NSW.
With Samantha Connor, Kelly Cox, Jax Jacki Brown, and Shakira Hussein in Melbourne for an MP briefing about the upcoming assisted suicide bill (which as it is written currently is incredibly vague, unsafe, & deeply dangerous to disabled people, especially those of us with degenerative or “life limiting” conditions – although we are consistently being left out of the conversation). I don’t know if they listened or seriously considered our words but I hope with all my congenitally deformed heart that they did. I am scared, for myself and for my crip family.
I am terminally ill. If I am unlucky I die tomorrow. If I am lucky, with support and treatment, I might have a few years left in me. But I have been rejected from the disability support pension five times in three years, including an appeal to the administrative appeals tribunal. They concluded that I am certainly severely disabled and dying, but not severely disabled and dying enough for Centrelink standards. Centrelink requires multiple specialist reports with very specific wording. They don’t accept GP reports except as secondary supportive documents. My specialist appointments are as much as $560 for 45 minutes, and the wait time can be as long as a year. Many of their offices are inaccessible. Many are far away. There are very few drs familiar with EDS in Australia.
My joints dislocate every day. When I sleep. When I turn my head to the side. When I raise my arms above my head. Parts of my spine, my wrists, my fingers, my shoulders, my ribs, one of my collarbones, my knees, and my subtalar ankle joints are dislocated as I write this. I am not currently prescribed any pain medication. I have my neurosurgeon’s blessing for medical marijuana, which is federally legal but not yet being legally dispensed in NSW.
I am suicidal. I struggle with suicidal ideation every day. When I get off this tram I will catch the replacement bus and wheel back to my friend’s place. I will not wheel into the road or into the path of the next tram. But it will be hard. It’s always hard.
It would take me two GP appointments and ten days to access assisted suicide.
We need assisted living first.
Today is the first anniversary of the Sagamihara massacre. Mostly when I speak about Sagamihara – which I do a lot – people don’t know what I’m talking about. They don’t recognise the name Tsukui Yamayuri En, the residential home where 19 disabled people were murdered while they slept and 26 more were injured, some grievously. They don’t know the name Satoshi Uematsu, the murderer. They certainly don’t know the names of the 19 people murdered, because contrary to Japan’s usual protocols the names were not released, for fear of embarrassing the families who did not want their association with a disabled person to be revealed.
Uematsu worked at Tsukui Yamayuri En before deciding that he could no longer stand the “tired faces of guardians, the dull eyes of caregivers working at the facility”.
He wrote in a letter to a politician some months before the murder about his intentions: “I envision a world where a person with multiple disabilities can be euthanized, with an agreement from the guardians, when it is difficult for the person to carry out household and social activities.”
He was very specific. “The Plot: It will be carried out during the night shift, when staffing is low. The target will be two facilities where many multiply disabled people reside… The act will be carried out speedily, and definitely without harming the staff. After wiping out the 260 people in two facilities, I will turn myself in.” He wanted to be rewarded for his act with 500 million yen and a new identity. He considered the murders to be “for the sake of Japan and the world”, “to revitalize the world economy”.
There is a bill currently being introduced in the Victorian parliament, with MPs to be granted a conscience vote, on what has variously been termed “euthanasia”, “assisted dying”, and “assisted suicide”.
Euthanasia is a word coined by the Nazi Aktion T4 program, meaning “good death”. It referred to the murders of disabled people by the Nazi regime, of “patients who, after a most critical diagnosis, on the basis of human judgment [menschlichem Ermessen], are considered incurable, can be granted mercy death [Gnadentod]”.
70,273 people we know of were murdered, although the actual numbers are likely higher, and 360,000 disabled people were sterilised. The difference between the Aktion T4 program and other Nazi death programs was that the first victim, Gerhard Kretschmar, a four month old child, came to be killed because his parents petitioned Hitler for his death.
The wikipedia page on Aktion T4 calls this “involuntary euthanasia”, to be contrasted with “voluntary euthanasia”.
There is no such thing as voluntary euthanasia. The Victorian bill, regardless of what it is named, is for assisted suicide. It is not for assisted dying – that’s called palliative care, end of life care, and advance care directives. Dying people in unutterable pain are already given options around refusing treatment and quietly ending their lives assisted by morphine. I should know, I’m one of them.
Currently the proposed bill only applies to terminally ill people, such as myself, although it has been criticised for not including chronic illness, degenerative disability, or any kind of permanently disability. If it passes the bill will likely be extended to at least those groups, as has happened elsewhere. In the Netherlands, where euthanasia and assisted suicide have been legal since 2002, it has been applied to children, a trans man who still felt dysphoric after surgery, an elderly woman who felt that she was not beautiful anymore, people experiencing depression and no other disability, and other people experiencing what the Dutch government considers to be “hopeless and unbearable suffering” or who are otherwise “tired of life”. This is not a “slippery slope” argument, it is the logical and planned extension of the law.
The question remains as to whose suffering is considered “hopeless and incurable”. A friend of mine who is a wheelchair user was told in an Australian emergency mental health ward that “of course you want to die, you’re in a wheelchair, we’d understand if you want to go home and do that”.
Supposedly the question is about pain, and yet for some reason the optimal solution to physical pain is not pain medication but death.
And what of the social barriers inhibiting quality of life, such as the lack of decent curb cuts in my area, the lack of accessible transport, the lack of accessible education? Why is my life considered the worst kind of suffering possible, by people who have never lived it?
Or is it just that we are a burden on society? As Uematsu said, after all, “the disabled can only create misery”.
[Image description: a Japanese flag shedding one red tear drop. The universal symbol fir disability is in the middle of the flag. The text reads “Mourning those killed at Tsukui Yamayuri En. End hate against disabled people’. The black triangle logo, an upturned white triangle on a black background, is beside the text.]
Image by Samantha Connor.
[image description: collaged text in pink orange & white on purple background, UNSPOKEN WORDS June 3-4 RED RATTLER: performances/workshops/panels/open mic reading space]
oh gosh there has been so much happening lately & i have so little time to think let alone to write anything about any of it. i am running desperately late on a numberof important projects (including salvaging my Honours degree – i have just yesterday managed to get access to Dragon dictation software which i am very much hoping will help with the writing of long essays with dislocated wrists part of that!!)
most recently neglected: my appearance in a series of panels & lectures on at UNSPOKEN WORDS, a festival of stories. the sunday evening session (including a poetry reading from myself) was Auslan interpreted by the excellent Auslan Stage Left. i am quite proud of the accessibility guide i helped develop which is available here.
the program is available here & lists the incredible lineup of artists and panels, including Hani Abdile, Evelyn Araluen, Maryam Azam, Stephany Basia, the Black and Deadly Women’s Poetry Circle, Emily Crocker, Winnie Dunn, Stelly Gappasauress, Isaac Green, Dan Hogan and Stacey Teague of Subbed In, Lizzy Jarrett, Gabrielle Journey Jones, Holly Friedlander Liddicoat, Fayroze Lutta, Paige Phillips, Poesifika, Candy Royalle, Sea, Ella Skilbeck-Porter, Effy Marie Smith, Margarita Tenser, Thelma Thomas aka MC Trey, Bron Watkins, and Joseph Zane. the festival was MC’d and organised by Emma Rose Smith.
i ran 1 solo lecture, was on 2 joint panels, & read some of my poetry in the evening.
[image description: white text on pink and blue background. PANEL – DEFINING OURSELVES FOR OURSELVES]
Defining Ourselves for Ourselves
Maryam Azam, Winnie Dunn, Robin M. Eames
11:15am – 12:15pm, main stage
Can we define ourselves by writing ourselves? We write ourselves, in whatever way possible for our individual needs, so as to create alternatives to single narratives. We need to see ourselves represented by people like us. Too many stories filter the whole world of experience through the gaze of abled cishet white people. This panel discusses the resistant power of telling our own stories, through the symbolic dialogue between living, visibility and text. We ask if and how we can write despite and beyond the dominating gaze of dual invisibility/hypervisibility that often occurs around politicised bodies.
[image description: white text on yellow and blue background. LECTURE – CRIPPING THE LITERARY: FINDING CRIP CULTURE]
Cripping the Literary: Finding Crip Culture, Learning Crip Language
Robin M. Eames
2:30 – 3:00pm, main stage
A fifth of Australians are disabled. So where the fuck are they? Are they at your poetry events? Are you reading their work? Are you listening to their communities? Are you fighting alongside them for their civil rights? If not, why? How do we change that? How can a gig, or space, or culture, be accessible (or not)? What are we overlooking? Why aren’t wheelchair users coming to our non-wheelchair-accessible events? How does disabled culture & community even manifest itself? For few answers & more questions, come to this lecture by Robin M. Eames, a disabled queertrans warrior poet who is only mostly dead.
[image description: white text on pink and blue background. PANEL – QUEERING POETRY: WRITING OURSELVES INTO EXISTENCE]
Queering Poetry: Writing Ourselves Into Existence
Margarita Tenser, Isaac Green, Robin M. Eames
5:00 – 5:45pm, main stage
Three trans, queer, & disabled panellists speak about queering poetry, trans retrohistories, art & intersectional identity, living in ill-fitting worlds & bodies, finding ourselves in stories not made with us in mind, and writing ourselves back into the narratives.
[image description: white text on pink and yellow background. PERFORMANCES – UNFINISHED BUSINESS]
Doors open (and dinner served) from 6:30, performances start 6:45. Main stage.
Hani Abdile, Winnie Dunn, Isaac Green, Robin M. Eames, Lorin Elizabeth, Dan Hogan, Elizabeth Jarrett, Gabrielle Journey Jones, Ella Skilbeck-Porter, Margarita Tenser, Auslan Stage Left
Come one and all to the biggest session of Unspoken Words! Hosted by the wonderful Lorin Elizabeth, this night will feature poetry readings by Winnie Dunn, Isaac Green, Robin M. Eames, Dan Hogan, Elizabeth Jarrett, Gabrielle Journey Jones, Ella Skilbeck-Porter and Margarita Tenser.
Hani Abdile will then present Absent Souls: A conversation with imprisoned souls. This new performance will be accompanied by a Q&A session and Hani’s performance of her own poetry.
This session will feature live Auslan interpretation thanks to Auslan Stage Left!
Dinner will be available thanks to Parliament on King, the social enterprise caterer. Beautiful food made with love. Proceeds from the catering are reinvested into hospitality training programs for locals with asylum seeker / refugee backgrounds at the King St café.
[image description: event poster with a not-quite-complete list of artists, in the style of the featured image of this blog post, described above]
the festival was held at the Red Rattler Theatre, on the stolen lands of the Gadigal Wangal peoples of the Eora nation. sovereignty has never been ceded. always was, always will be Aboriginal land.
i really can’t emphasise enough how utterly awed, delighted, & proud i felt to be sharing a stage with such powerful & beautiful artists, & to have the chance to listen to their words. we did something really special last weekend & it gives me hope.
[image description: Tahlia Day’s wonderful cover art for the Strange Horizons 1 May 2017 issue; an abstract greyscale piece of rippling currents and dotted lines in beautiful swirling patterns, something like looking from above at a topographic map of a storm.]
cw: death, terminal illness, suicide mention, Sagamihara, poetry
I had a poem published in Strange Horizons recently. You can read it on their website here, in the 1 May 2017 issue. They’re a wonderful source of diverse & nuanced speculative fiction and there are some beautiful pieces published alongside mine in the same issue. I wrote CRADLE THE SEED last year, while in a dark place that I am not entirely sure I have escaped from. It’s a poem that tries to be many things at once – a plea for help, a prayer to dead gods, a premature requiem for myself, an attempt at coming to peace with my death & regaining hope for my life.
It’s an understatement to say that it’s difficult to live with an unpredictable terminal illness. I have been intimately acquainted with death my whole life & thought I understood my relationship with it, the fear and the longing, but my diagnoses & the rapid degeneration of my health has pulled everything into terrifying focus for me. The fear is overwhelming because it derives from the unknown. At once I have the certainty of my death and the uncertainty of exactly when it will strike. My heart stops frequently. My MCAS seems to react to the entirety of the known universe, so just about anything can send me into anaphylactic shock without warning.
For a time last year I thought that I could defeat the fear by taking control of my own death, choosing the time & form, relieving my loved ones of the burden of my crippled existence and the inevitable trauma of my unexpected demise. I am so very glad to say that I was terribly wrong. My crippled existence is not a burden but a gift. I still spend perhaps too much of my time attempting to support my loved ones through the anticipatory grief of my death, but the fact is that when I die, I die, and I will not be around to help them through it, and my energy is better spent devoted to my life rather than my death.
Last year, in August, Jess Jacobs died. She was a professional patient advocate and health innovator. She was 29. She had two of the same diagnoses that I do: Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome. The two are often comorbid. Jess and I weren’t friends, and we did not know each other well. We were in several EDS online communities together. Sometimes I commented on her selfies. EDS is a brutal condition, especially the vascular type, and we lose our own far too frequently; just about every day my online communities are notified of someone’s death, or we have a suicide scare, or people just disappear. I don’t know why Jess’s death hit me so hard the way it did. It was very shortly after the Sagamihara massacre. It was a few months after my first episode of respiratory arrest due to a dislocated first rib wandering into my trachea & carotid artery – my first emergency visit. One of Jess’s last blog posts ended with an image bearing the text ANTES DE MORIR QUIERO VIVIR, the translation of which she directed towards a colleague in a postscript. “P.S.” she said: “Before I die, I want to live.”
This poem is for Jess.
Cradle the seed in your hands.
Cup the spark. Oh old gods please
do not let this brightness gutter.
Let me constellate filled with
brilliance insangelous let me be
stars let me be the last fading heat
of sinking sunset gilt and honeyed.
Let me luminate let me soften
and melt like glowing wax
let me linger in warm embrace
of soft-lipped women let me live
diaphanous. Let the wind fill me
let me rise inexorable let me burn
without burning out eternity
ephemeral. Let me blossom
and billow like feathered cotton
over fields of sunflower yellow
jewelled birds in calypsonian half-heard
melody. Let me sink saltwater
gentleness inevitable in stygian tides
let me form shadows in fog let me
tinge melancholy in the curl
of your mouth. Let me flourish
seed of pomegranate gleaming seed
blush of rosy dawn tranquillity
hush of echo resonating primordial
thief of fire. Let me grow into myself.
Let me deepen. Let my soul brew sweet
fermentation beneath dappled almond
and cherry and laurel and brambling
tangled aconite and stinging nettle.
Oh old gods if ever you had hearts
let my heart beat and continue beating
let me ripen before I wither please—
Let me live before I die.
An article from The Chronicle of Higher Education has been making the rounds this week, authored by professor of psychology Gail A. Hornstein. To quote Alice Wong of the Disability Visibility project, Hornstein’s piece – titled “Why I Dread The Accommodations Talk” – is, well, “a dumpster fire of an article”.
Professor Hornstein teaches at Mount Holyoke College, a liberal arts college for women in Massachusetts. According to the college’s website, “Mount Holyoke women build robots, stand for social justice, and climb mountains”, asking only that their students be “smart, determined, and willing to embrace change”. Nowhere on their website do they state the fine print: that their students are expected to be abled, or at least to overcome the infrastructural challenges of disability alone and without support from their tertiary educators.
Hornstein’s complaints are nothing we haven’t heard before. She begins the article by describing a disabled student of hers: “not confrontational, but not exactly friendly, either”; wearing an “old black motorcycle jacket and punk haircut”, “avert[ing” her gaze”, speaking in “a flat tone”, and “mumbl[ing]”. In contrast, Hornstein “relaxes into [her] chair” and “look[s] directly” at her student. If Hornstein is sharing these details in an effort to humanise her student, she fails miserably: this is a textbook stigmatised description of millennial mental health. We know that the issue in question is mental health and not physical because that’s the point of Hornstein’s article.
Although in the USA students are not legally required to disclose their disabilities in order to receive ADA-mandated accommodations, Hornstein takes it upon herself to outline the ways in which “mental-health [sic] problems differ from many physical disabilities”, are dealt with in “overly broad and vague criteria”, and are “variable” (since physical disabilities are naturally never variable).
Perhaps Hornstein hasn’t read the sections of the ADA relating to eligibility, in which “disability” is defined as
A physical or mental impairment that substantially limits one or more of the major life activities of such individual.
The definition of “disability” shall be construed broadly in favor of expansive coverage, to the maximum extent permitted by the terms of the ADA.
(1) Physical or mental impairment means:
- (i) Any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more body systems, such as: neurological, musculoskeletal, special sense organs, respiratory (including speech organs), cardiovascular, reproductive, digestive, genitourinary, immune, circulatory, hemic, lymphatic, skin, and endocrine; or
- (ii) Any mental or psychological disorder such as intellectual disability, organic brain syndrome, emotional or mental illness, and specific learning disability
(2) Physical or mental impairment includes, but is not limited to, contagious and noncontagious diseases and conditions such as the following: orthopedic, visual, speech and hearing impairments, cerebral palsy, epilepsy, muscular dystrophy, multiple sclerosis, cancer, heart disease, diabetes, intellectual disability, emotional illness, dyslexia and other specific learning disabilities, Attention Deficit Hyperactivity Disorder, Human Immunodeficiency Virus infection (whether symptomatic or asymptomatic), tuberculosis, drug addiction, and alcoholism.
(3) Physical or mental impairment does not include homosexuality or bisexuality.
Hornstein then escalates the matter even further: “faculty members”, she writes, “need to respond appropriately and help students to learn what’s a crisis (and what’s not), and to understand when it is reasonable to ask for the course structure to be changed or for expectations to be modified (and when it’s best to try to cope on one’s own).”
Let’s allow that to sink in for a moment. Hornstein’s student has come to her with legally-issued accommodations for a documented mental illness. For those unfamiliar with the process of diagnosing, documenting, and requesting accommodations for mental health conditions, I can tell you now that it’s hellish. Any student who has access to disability accommodations has already been through an absurd amount of diagnostic bureaucracy in order to get to that point – bureaucracy that’s made even harder if, for example, you have a disability that interferes with your executive function, ability to make or keep appointments, capacity to make phone calls, chase up referral forms, or explain intimate details of your life to various medical and authoritative bodies.
Hornstein’s student’s request is very simple: she has panic attacks and has been granted extended deadlines in the event that her disability interrupts her studies. This is in accordance with the Americans with Disabilities Act, which states that:
Any private entity that offers examinations or courses related to applications, licensing, certification, or credentialing for secondary or postsecondary education, professional, or trade purposes shall offer such examinations or courses in a place and manner accessible to persons with disabilities or offer alternative accessible arrangements for such individuals.
…Any private entity that offers a course covered by this section must make such modifications to that course as are necessary to ensure that the place and manner in which the course is given are accessible to individuals with disabilities.
Unfortunately for Hornstein’s student, instead of reassuring her that her disability accommodations will be provided as is required by law, Hornstein – rather bafflingly – explains that her course has a “fast pace” and that her student would “be at a significant disadvantage if [she] missed a test”. (…Rather the point of needing legal accommodations, no?) Instead of telling her student that she will comply with the law, Hornstein says that she does not provide make-up exams in her course, and asks what might be the most insulting question ever asked of a student with panic disorder: “What do you usually do to calm down before an exam?”
“What do you usually do to calm down before an exam?”
If I were Professor Hornstein’s student, and in response to my request for legal accommodations she had asked me, essentially, “Have you thought about calming down?”, I may well have laughed in her face. Or quit the course right there. Or reported her to my university’s Disability Support Services.
Anyone who has documentation and accommodation requests has already got all the coping skills, all the strategies, all the tools, & they’re damn resilient just to get that far in the first place. It’s condescending and a fundamental misunderstanding of the way panic attacks work. Like – oh shit, it hadn’t occurred to me to just STOP being mentally ill! No one’s ever suggested that before! So fucking helpful!
I’ve been having panic attacks since I was a child. I’ve been getting psychiatric and psychological help for them for the last five years. I still get panic attacks. Sometimes they occur in response to stimuli and sometimes they come out of nowhere. My heart beats irregularly and very fast, I experience dyspnoea (shortness & irregularity of breath), my whole body breaks out in a sweat, I have hot and cold flushes, my chest feels tight and painful, I might blush bright red or go dead pale, I shake like a stick insect in a hurricane, I feel numb, dizzy, tingly, my throat feels choked, my limbs feel weak, sometimes my vision goes dark or blurry, I feel nauseous and sometimes throw up, and I often experience dissociation, derealisation, or depersonalisation. Usually I end up sobbing my guts out.
Like many people who experience panic attacks, I often worry about “losing control” or “going crazy” (note: “crazy” is often considered a slur, or at least a remarkably rude descriptor, in neurodivergent communities). Unlike many people who experience panic attacks, I am lucky enough that I have never mistaken a panic attack for a heart attack – possibly because I have actual heart attacks to compare them to (I have bicuspid aortic valve and an ascending aortic aneurysm, and on more than one occasion have gone into cardiac and/or respiratory arrest.) For Professor Hornstein’s benefit, I can quite happily report that panic attacks can be every bit as debilitating, painful, and terrifying as heart attacks. Sometimes my panic attacks last under a minute, and sometimes they can last hours. Generally they will last between twenty to forty minutes. (For those who might find it useful, you can download a copy of the Panic Disorder Severity Scale here, and you can access the Panic and Agoraphobia Scale here.)
Once I am in the throes of a panic attack there is very little that I can do except ride it out. In that respect they’re very much like rip currents. Rip currents are narrow, extraordinarily powerful currents that are easy to spot if you know what you’re looking for, but fiendishly difficult to recognise if you don’t. My mother volunteered as a lifeguard when we lived on the coast, so for a couple of years every Sunday my siblings and I were enrolled in the junior surf lifesaving program. There are three ways to escape a rip: swim between the flags where the lifeguards are watching, hold your arm up straight & wait to be rescued; swim sideways away from the pull of the water, parallel to the beach, until you escape; or relax, keep your head above water, and wait for the current to eventually bring you back to shore. The worst thing you can do if you’re caught in a rip is panic and try to swim straight back to shore; the rip will pull you rapidly away from the beach and you’ll exhaust yourself trying to fight the tide. Rip currents kill more people on average in Australia than bushfires, floods, cyclones and sharks combined.Hornstein is the lifeguard here. Her student was caught in a rip current and held her arm high for assistance, as she should be able to expect when swimming in a lifeguard-patrolled area. And yet instead of paddling out to rescue her, Hornstein left her student to fend for herself, with the justification of encouraging strong swimming. But not everyone is a strong swimmer, and you don’t become a strong swimmer by flinging yourself into a rip and hoping for the best.
According to Hornstein, her student’s response was as follows:
She mumbled a few things, and we talked a bit longer, but little concrete guidance emerged.
The term moved along, and I saw her each week in the back row of the lecture hall, but she never again came to my office. The TA of her lab section said Lee never missed a deadline and was doing well. I didn’t give her specific advice, nor did I ignore the reality of her problems. Instead, I conveyed confidence in her capacity to succeed and to come up with strategies to manage her difficulties. I have no idea if she still suffers panic attacks, but she didn’t miss any deadlines and got a high grade in my course.
It sounds like Hornstein’s student made it out of the rip alive – maybe because she’d been caught in rips before and knew what to do, or because a nearby swimmer noticed her distress and helped her out. Maybe she gave up and relaxed into the current, hoping to at least stay awake & above water for as long as possible, only to get lucky and be brought back to shore by happenstance, depending on the shape of the beach. Either way she was put in a terrifying position, denied legal aid, & forced to struggle her way out while being told it was building moral fortitude. Hornstein counts this as a success. But how many other students have drowned?
You can’t fight the whole ocean alone.
Hornstein, naturally, is convinced that her negligent approach is actually what’s best for her students. She describes herself as “an outspoken ally of many disability-rights activists” who has “taught and written about mental health for 40 years”. And yet she continues to betray her lack of understanding or compassion toward disability & disabled lives with every subsequent paragraph. Frankly, if this is the mindset of the last 40 years of mental health academia, no wonder it’s in such a sorry state.
“People have the right to behave oddly”, she claims, and as an example: “I once had a student who did not look directly at me or any other member of that 15-person seminar for the entire semester. I’ve had students who made strange head movements in class because they were hearing voices.”
This is not “behaving oddly”. It’s deeply, insidiously ableist that Hornstein was examining her students’ body language to this degree in the first place, that she considers this worthy of note, let alone that she considers herself super progressive for tolerating it. A very common hallmark of autism is significant discomfort making eye contact. ABA (Applied Behaviour Analysis) therapy, which has been rightfully called out in many forums as being horrifyingly abusive, holds forced eye contact as one of its main tenets. Sparrow Rose at the blog Unstrange Mind describes witnessing an instance of ABA therapy in action outside a behavioural clinic:
A mother and father came out of the clinic with a little girl, around 7 years old by my best guess. Mother said, “Janie (not the actual name), look at me.” Janie didn’t look at her mother. The mother said to the father, “you know what to do,” and the father took hold of Janie and turned her head toward mother, saying, “look at your mother, Janie.” Janie resisted, turning her head away and trying to pull out of her father’s hands.
Mother crouched down and Father lifted Janie’s whole body up, laying her across Mother’s knee, face up. “Look at your mother, Janie,” father said. “Look at me, Janie,” Mother said. Janie began to whimper. Her body was as stiff as a board. Father held her body firm and Mother took hold of Janie’s head, “look at me, Janie,” Mother said.
I was glued to the sidewalk. I didn’t want to see any more but I couldn’t look away, couldn’t walk away. Janie began to moan and thrash her body. Father’s hands held her body steady as she kicked and flailed. Mother’s hands held Janie’s head steady. Both kept urging Janie to look at her mother. Janie’s moans turned to screams but neither parent let her go.
Finally, Janie’s entire body went limp with defeat. She apparently made eye contact because Mother and Father began to lavish praise on her. “Good girl, Janie. Good eye contact. Good girl. Let’s get some ice cream now.” Janie’s limp body slid to the sidewalk where she lay, sobbing. Father picked her up and carried her to the car, the whole way praising her submission. “Good eye contact, Janie.”
I hate making direct eye contact. It makes me feel queasy and hypervisible, like a stranger holding a hug for too long. I can fake it enough to get by but it’s unpleasant. I feel very sad at the thought of my lecturers taking note of whether or not I am making eye contact and concluding that it’s “odd” but something they are reluctantly willing to tolerate. Autistic ways of being in the world aren’t “odd”. The student in question might have been autistic, or they might have had social anxiety, or they might have been shy, or they might just have not wanted to make eye contact. Regardless, policing body language in this manner is a manifestation of systemic ableism.
Hornstein’s second example is equally infuriating – what, to her, constitutes “strange” head movements? And how in the hell did she come to the conclusion that those “strange head movements” must have been because the student was experiencing auditory hallucinations? Why did Hornstein phrase it as hearing voices rather than just “auditory hallucinations? Why did she feel the need to specify at all?
She provides concrete examples of situations that she considers “serious” and “not serious”. “Not serious” conditions include: headaches, colds, “being anxious about the assignment or having a minor conflict with a roommate”. “Serious, unexpected circumstances” include: “coming down with the flu or experiencing the death of a close relative… staying up all night with a suicidal friend or having an exam the morning after a distressing break-up.”
It doesn’t escape me that all of her examples of what actually constitutes as “serious” in her eyes are things that affect abled people. Having the flu, experiencing the death of a relative, staying up with a suicidal friend. What if I’m the dying relative? What if I’m the suicidal friend? What if a cold is just as debilitating for me as the flu? For that matter, what if I am immunocompromised and fellow students coming to class with “not serious” colds pose a significant danger to me? What if my anxiety and agoraphobia are so intense that they prevent me from leaving the house for weeks at a time? What if my migraines are so gut-wrenchingly painful that I can’t speak, see, hear, or move? All of these are things I have experienced in an education context. For the most part, as with Hornstein’s students, I have been left to make my way out of the rip alone.
Hornstein believes that “people have to learn to manage chronic problems and conditions, and to cope with the crises — be they physical or emotional — that can affect any of us at certain moments.” Except Hornstein hasn’t been affected by chronic conditions, or by physical or emotional crises: she writes that “For some people, school is a refuge, a conflict-free zone where they can relax and be successful. (I know; I was one of them.)” It’s easy to advocate for strength when you haven’t had to be strong. And of course it’s beneficial for people experiencing hardship to learn fortitude and resilience, but they’ll be doing that already, on their own terms, and they shouldn’t have to face infrastructural obstacles in tertiary education for the sake of building character. Regardless of Hornstein’s opinions about strength in the face of adversity, making the conditions of her students’ education more adverse is not the solution, especially when this logic is applied only to disabled students.
Hornstein calls this “crucial life lessons of adulthood”, and cautions against “overprotecting” students. She considers her authoritative capacity as a teacher to include “determining who actually requires assistance, and in what form, and discouraging students from defining themselves by what they can’t do”.
I would posit that it’s a lot easier to avoid defining yourself by what you can’t do if you live in a world where “what you can’t do” doesn’t have such an enormous definitional capacity toward your identity. I can’t breathe underwater and I can’t speak medieval Latin, but those things don’t prevent me from accessing education on the same level as my peers. If my teachers were regularly asking me “but have you just tried harder to breathe underwater?” then perhaps my lack of amphibiousness would seem more immediately relevant.
Hornstein ends the article with these parting lines:
Lee’s accommodation letter did serve one key function: It gave her permission to meet with me and to reveal, if she so chose, potentially embarrassing private information that she would not otherwise have told a professor.
And it gave me a chance to model an attitude of nonjudgmental assessment of the circumstances, and to encourage self-reliance, coping skills, and confidence in a student’s strengths and talents.
It’s not embarrassing to be disabled and seek legal accommodation.
It’s not good teaching to “nonjudgmental assess” (…ie… nonjudgmentally judge???) circumstances that aren’t your job to assess, & then to essentially say “your panic attacks are a weakness & character flaw that you can overcome by Coping and being Self Reliant”.
I don’t know what hardships Professor Hornstein has experienced in her life. Regardless, her hardships are not everyone’s hardships, and her coping strategies are not everyone’s coping strategies. In writing this article she has not positioned herself as disabled person, a mentally ill person, or a person facing adversity in any form; she has positioned herself as “a professor of psychology at Mount Holyoke College” and “an outspoken ally”.
It’s not up to teachers to decide how or when the ADA should apply to their students. The point of the ADA is that it applies to everyone, all the time. Anti-discrimination legislation exists to remove structural barriers. If Hornstein is concerned about her students’ ability to face adversity later in life, she should put her energy towards eradicating the conditions and causes of that adversity, not just encourage her students to get used to it early.
It’s not up to people who do not need assistance to decide “who actually needs assistance, and in what form”. Disability accommodations provide equality, not advantage. If our efforts to remove disadvantage overshoot the mark and advantage certain groups to the detriment of others, then we can tackle that issue as it arises.
It’s not up to abled people to make moral judgements about disabled people’s lives, experiences, body language, ways of coping with adversity, or the avenues of legal aid that they choose to employ.
To those fighting the rip alone: I’m so sorry. It’s rough and I’ve been there. It’s so hard to keep going when you’re scared, lost, in pain, and can’t see the shore. But rips are only dangerous if you don’t know what you’re dealing with. Maybe nobody will help you, and I’m sorry for that too. I can’t promise that a time will come when you’ll be able to breathe easy. But I can damn well promise that there’s solidarity in struggle, that I won’t go quietly, and maybe if we’re lucky one day we’ll fight our way out together.