I did a workshop today at the University of Queensland for the Queer Collaborations conference, titled QUEERING CRIP, CRIPPING QUEER.
Love & solidarity,
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
I wrote an article for Junkee about Stephen Hawking and the media reception of his death. You can read it here.
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.
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
On Friday the 17th of November, the University of Sydney Disabilities & Carers Collective held a protest outside Prime Minister Malcolm Turnbull’s office, condemning the current refugee crisis and demanding the immediate evacuation of Manus Island.
We also delivered a statement & list of demands, which you can read below, or download as a word document here: University of Sydney Disabilities and Carers Collective Statement and List of Demands. You can also read it at the Disabilities & Carers Collective’s Facebook page here.
The University of Sydney Disabilities & Carers Collective acknowledges:
Consequently, the The University of Sydney Disabilities & Carers Collective demands:
The 2017 Disabilities & Carers Collective Office-Bearers
Mollie Galvin, Hannah Makragelidis, and Noa Zulman
The 2018 Disabilities & Carers Collective Office-Bearers
Robin Eames, Mollie Galvin, and Ren Rennie
Recently one of my poems was a finalist in the Coalition of Texans with Disabilities’ Pen2Paper disability-focussed creative writing contest. I have reproduced the text of the poem here.
To my crip siblings, crip lovers, & crip mentors, to Laura Hershey and to Stella Young.
To the crips I love and who love me in return
from a distance or intimately close during
long nights where neither of us can sleep for pain
waiting for morning and the pain that morning brings
I am here for you.
To the crips who have been crips for longer
than I have been on this earth and who
welcomed me with open hearts and fire
of loving purpose in ancient battle
I am here for you.
To the crips who taught me power
comes from pride and pride comes from practicing
until you are proud (and that you don’t get proud
by being shit: you get proud by practicing)
I am here for you.
To the crips who do not know that they are crips
but know only that they hurt that their bones ache
that their muscles are heavy and that their eyes sting
in sunlight after another unhelpful appointment
I am here for you.
To the crips institutionalised and imprisoned
whose first crime was living and continuing to live
abused and neglected in homes that are not homes
trapped not in their bodies but by bar and mortar
I am here for you.
To the crips who sleep overnight
in desk chairs and wheelchairs
in the offices of politicians bedecked with banners
reading FREE OUR PEOPLE
I am here for you.
To the crips that have houses but not homes
or homes but not houses or neither home nor house
forced to live on the kindness and sideways glances
of strangers on public transport
I am here for you.
To the crips whose lands have been stolen
whose waters have been stolen
whose children have been stolen and whose lives
continue to be stolen
I am here for you.
To the crips who dislocate their hips
doing full service sex work to pay for medical bills
incurred from dislocating their hips
while doing full service sex work
I am here for you.
To the crips fighting to love each other
and to have their love recognised on equal terms
with all who are in love without penalty or price
or public stigma or getting bashed on street corners
I am here for you.
To the crips fighting to love themselves
after being unloved by those who should have loved them
or after being hurt by those who professed their love
but only when it was convenient
I am here for you.
To the crips who are drowning
in cold oceans seeking refuge or drowning
on dry land as their lungs fill with fluid
while emergency registrars do not watch
I am here for you.
To the crips who are burning
who have burnt out and from the ashes
are rising again charcoaled and brittle
and bold and battle-hardened
I am here for you.
To the crips who died
after living and loving and fighting
and then falling
to be remembered with love and fight
I am here for you.
To the crips who aren’t dead yet
living and fighting and fighting to live
and loving each other and fighting
for each other
I am here for you.
To the young crips, the old crips, the
queer crips, the trans crips, the brown crips,
the black crips, the proud crips, the tired crips,
the warrior crips, the poet crips, the dead and alive crips,
I think of you
I love and fight for you
I am here for you.
[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.
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”, and the college asks 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” (Hornstein seems unaware that physical disabilities are also frequently 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 easily-identifiable stimuli and sometimes they come seemingly 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 a bicuspid aortic valve and an ascending aortic aneurysm, and have frequent emergency episodes of various kinds of cardiac nonsense.) 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 “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 a 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 we’ll manage to fight our way out together.