CRIPS AGAINST THE CAMPS

“crips against the camps” in red block capitals, “rally for manus refugees” in smaller white block capitals, on a black background

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.

#EvacuateManus #CripsAgainstTheCamps

Crips Against The Camps protest

[image: eight young activists from the University of Sydney Disabilities & Carers Collective & Sydney Grassroots with their crossed arms raised at a protest outside Prime Minister Malcolm Turnbull’s office in Edgecliff. One is a wheelchair user, one has a purple cane, & one has a sight cane. There is a megaphone on the ground. Two of the activists (myself and my mate charlie) are repping Annie Segarra’s excellent THE FUTURE IS ACCESSIBLE shirts.]

University of Sydney Disabilities & Carers Collective Statement in Solidarity With Manus Island Refugees & Condemning the Ongoing Refugee Crisis

The University of Sydney Disabilities & Carers Collective acknowledges:

  1. (i) That Australia is a racist settler state built on colonial violence;
    (ii) that the founders of “Australia” also came here on boats and without permission;
    (iii) that sovereignty was never ceded and there is no treaty with our Indigenous peoples;
    (iv) that the Aboriginal Provisional Government and the Indigenous Social Justice Association have stated that asylum seekers are welcome on Aboriginal lands in Australia;
    (v) and that the false Australian government consequently has no right to refuse entry to refugees.
  1. (i) That the United Nations Convention Relating to the Status of Refugees, which Australia ratified in 1954, defines a refugee as someone who is unable or unwilling to return to their country of origin owing to a well-founded fear of being persecuted for reasons of race, religion, nationality, membership of a particular social group, or political opinion;
    (ii) that 90% of asylum seekers who come to Australia by boat have been found to be legitimate refugees under the UN Convention, even though the terms of the Convention itself are limited;
    (iii) that the Australian Government’s Department of Immigration and Border Control’s insistence on referring to legitimate refugees as “illegal maritime arrivals” and “immigration detention detainees” is dehumanising and disingenuous.
  1. (i) That according to Australia’s ratification of the United Nations Convention Relating to the Status of Refugees, this government has an obligation to provide aid to refugees fleeing persecution, regardless of whether Australia has processed their claim or recognised their refugee status;
    (ii) that the Convention must be applied without discrimination on the basis of race, religion, country of origin, sex, age, disability, sexuality, or other prohibited grounds of discrimination;
    (iii) that the Convention recognises that refugees are often forced to breach immigration rules and should not be penalised for entering or staying illegally, nor should their freedom of movement be restricted, and that prohibited penalties include charges of immigration or criminal offences relating to the seeking of asylum, or arbitrary detainment purely on the basis of seeking asylum;
    (iv) that the Convention stipulates that no one shall expel or return (“refoule”) a refugee against their will, in any manner whatsoever, to a territory where they fear threats to life or freedom;
    (v) that under the Convention refugees have rights including the right to access to the courts, to primary education, to work, and the provision for documentation, including a refugee travel document in passport form;
    (vi) and that according to the Convention Australia is currently failing its obligations to refugees.
  1. (i) That Nauru and Manus Island are deeply harmful environments;
    (ii) that refugees on Nauru and Manus and in onshore detention centres experience a disproportionate prevalence of PTSD, suicidal ideation, and self-harm, as a direct result of their retraumatising surroundings;
    (iii) that the Australian government has placed refugees in environments that have caused them to develop mental, emotional, and physical disabilities arising out of trauma and neglect;
    (iv) that the Australian government has consequently failed to provide adequate healthcare to refugees.
  1. (i) That forcible institutionalisation of marginalised peoples is detrimental to health, happiness, freedom, and autonomy;
    (ii) that the forcible institutionalisation of disabled people is not so different to the forcible institutionalisation of refugees, and in both instances leads to further traumatisation, abuse, and neglect;
    (iii) and that disabled people in our Collective and the refugees on Manus, Nauru, and in onshore detention, many of whom are disabled themselves, share a common struggle.
  1. (i) That potential healthcare costs of refugees and asylum seekers are not a reason to deny them aid;
    (ii) that the above argument is a deeply eugenicist position and one that is predicated on the assumption that the worth of a human life can be determined by how much a person costs the state;
    (iii) that the above argument perpetuates harmful narratives around health and healthcare that are deeply dangerous to disabled people;
    (iv) that the above argument violates the United Nations Convention Relating to the Status of Refugees’ protections against discrimination on the basis of disability;
    (v) that refugee lives have worth regardless of how expensive their medical bills are;
    (vi) that it is a community’s responsibility to care for each other;
    (vii) and that refugees are part of our community.
  1. (i) That Australia has a responsibility to the refugees placed on Manus Island and subsequently abandoned;
    (ii) that the “alternative accommodations” provided to the abandoned refugees on Manus are not safe or adequate;
    (iii) that the refugees on Manus have a reasonable fear of persecution and violence if they continue to stay in Papua New Guinea;
    (iv) that Papua New Guinea’s immigration department and chief of police have issued statements disavowing responsibility for the Manus refugees and have called on Australia to fulfil its legal obligations;
    (v) that to place refugees in the harmful conditions on Manus was a human rights violation to begin with, and that to abandon them there is not a solution to the harm of offshore detention processing, but rather a compounding of the violence and mistreatment directed towards refugees applying to Australia for aid in the face of persecution.

Consequently, the The University of Sydney Disabilities & Carers Collective demands:

  1. That the Australian government evacuate the refugees and asylum seekers presently on Manus Island, close the detention centre on Nauru for good, and bring all the refugees and asylum seekers to the place of their choosing, whether that be Australia or New Zealand;
  2. That all mandatory detainment of refugees and asylum seekers should cease immediately;
  3. That all refugees and asylum seekers should be released into the community, and be given justice, freedom, legal and medical aid, and proper humanitarian support without delay;
  4. That Peter Dutton, the current Immigration Minister, be sacked, for gross dereliction of duty, for perpetuating harmful misinformation about refugees, and for participating in a system that enacted dire human rights abuses;
  5. That all future legislative approaches to refugees and asylum seekers, in both the government and the non-government sectors, across local, regional, national, and international levels, be led by consultation with the refugee community and with Aboriginal and Torres Strait Islander peoples;
  6. That specific laws be implemented prohibiting the mandatory detention of refugees and asylum seekers;
  7. That the Australian government fulfil its obligations to the United Nations Convention Relating to the Status of Refugees, including providing refugees with freedom, settlement, and humanitarian resources regardless of the way in which they came here;
  8. That the Australian government implement strategies for proper humanitarian aid with regard to refugees and asylum seekers travelling to Australia in dangerous conditions, including maritime rescue operations;
  9. That refugees and asylum seekers should be reunited with their families in cases where they have been involuntarily separated;
  10. That the Australian government adopt policies of accountability and repatriation, including acknowledging the torture and abuse that has been enacted under the auspices of the Australian Government’s Department of Immigration and Border Control, and making amends to those who have been directly or indirectly harmed as a result of the traumatising system of mandatory detention, the provision of appropriate healthcare and community support, and that the refugees and asylum seekers who have been harmed as a result of Australian government policies should be compensated along with their families, and that compensation should also be given to families of those who have lost their lives after being deported or forced to self-deport to danger.
F R E E  O U R  P E O P L E !

Ratified by:

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

HELL ON WHEELS

I wrote an article recently for Honi Soit about mobility accessibility, wheelchair users & our history at the University of Sydney, my beloved but dreadfully inaccessible uni.

You can read it here or on Honi Soit’s website.

I love my wheelchair. My wheels are rad as hell. My ride is a stylish manual MOGO Infinity with Round Betty wheels and a purple and green frame. The seat and backrest are specially fitted to my spine. Before I got my chair I was, for the most part, stuck at home. My joints dislocate daily, and while walking on dislocated hips is not impossible, it’s extraordinarily painful. There’s a reason my hospital patient records all have “high fall risk” at the top. But now that I’m not overexerting, trying to make my wobbly Jenga tower of a skeleton walk under its own power, I can go out dancing in my wheelchair and stay out for hours.

This said, making it through the world as a wheelchair user is exhausting. And please don’t misinterpret what I mean here: my wheelchair is a blessing. I used to stagger around on crutches and canes that dislocated my wrists and elbows if I used them for more than a few minutes, and leaving the house was such a tiring feat that I nearly absent failed my last undergraduate unit even though I was getting consistent HDs.

The problem is not the chair itself. The problem is that the paving stones on my street are broken to shit. The problem is that the four closest train stations to me are all inaccessible. The problem is that pushing myself uphill dislocates my shoulders, and power wheel attachments cost $9000. The problem is that I couldn’t access one of my honours seminars and my professor advised me to drop out rather than dealing with the lack of access.

In short, it’s not me, it’s USyd.

In five years of ambulatory study, I saw only two wheelchair users on campus. In my sixth year I have seen four more, mostly in the Assistive Technology Lab. I don’t know of any current staff members who are wheelchair users.

This is not statistically proportional. In Australia, 20 per cent of the population is disabled. The figure is 50 per cent in Aboriginal and Torres Strait Islander communities. Of course, not every disabled person is a wheelchair user. But enough of us are that our absence at the University is disquieting.

nma-44066052-001-wm-w685

Image: Jacob Baldwin, a white man in a red jacket, grinning wildly as he zooms past some trees on his red motorised wheelchair. Photo taken during the Ability Trek journey around Australia: 16,500 kilometres by motorised wheelchair from 1992 to 1996. Jacob Baldwin collection, National Museum of Australia.

USyd admitted their first female students in 1885: Mary Elizabeth Brown and Isola Florence Thompson. Our first self-identifying Aboriginal students were admitted in 1965: Charlie Perkins and Gary Williams. I don’t know who our first disabled student was.

According to the university’s archives, the first record that exists of a wheelchair-using student is Jacob Baldwin, who commenced study in 1975. Baldwin had cerebral palsy, which continues to affect one  in 500 Australians. In his application to study rehabilitation counselling at Cumberland College, he wrote:

“My qualifications to embark on such a course are almost nil, but the most important factor is that I feel very strongly, partly because of my own disability, about the unsatisfactory situation facing the handicapped people of today. A lot more has to be done by the able-bodied and the knowledgeable handicapped people in the community. Disabled people are human and more has to be done to introduce them into the ‘normal’ society and I, personally, wish to be in a position to help toward their acceptance and their general betterment.”

Cumberland College was not wheelchair accessible at the time. Baldwin had to wait outside the lecture theatre for other students to carry him and his wheelchair up the stairs. He was a skilled writer, but wrote by laboriously picking out letters on a typewriter one-handed. This prevented him from taking notes during classes, so he taped his lectures and his stepfather transcribed them. He later went on to become a founding member of People With Disability Australia, and was an early proponent of the ideas that laid the foundation for the National Disability Insurance Scheme.

The global disability rights movement had been rumbling underground for nearly a century at this point. When we are taught about Helen Keller in school, it is usually in the form of what the late and great comedian and writer Stella Young called “inspiration porn”: Keller is made out to be a helpless, animalistic youth, tragically prevented from communication by her deafblindness, and charitably aided by her teacher Anne Sullivan who taught her Braille and sign language. And yet Keller lived to 87 and became an outspoken suffragist and radical socialist.

2012-06-22-IMAGE_Helen_Strikers

[Image: HELEN KELLER CHEERS ACTORS’ STRIKE PICKETS. A newspaper clipping of Helen Keller joining the picket line at a protest of her own biopic.]

In 1949 she visited Sydney and founded the Gordon Davis House Youth Hostel in Stanmore. There were other disabled organisations constellated around the university grounds, but most of them were institutional in nature: the Weemala Home for Incurables; the Spastic Centre, now the Cerebral Palsy Association; the Callan Park Hospital for the Insane, founded in 1880, now the Sydney College of the Arts; and the New South Wales Deaf Dumb and Blind Institution, now the Institute Building, having been bought by USyd in 1961.

By the 1960s, disability activism had blossomed into a radical public movement in the United States. Like many other social causes, it began in student activism, namely at the University of California, Berkeley, where Ed Roberts and the Rolling Quads smashed their own curb cuts out of concrete, and at Gallaudet University, where Deaf students barricaded the campus with upturned buses in protest at the appointment of another hearing president. It wasn’t until the late 70s that disability activism came to the forefront in Australia. Joan Hume had graduated from USyd in 1969 as an abled student, then after breaking her neck in 1971, returned for postgraduate study as a wheelchair user. She wrote that in the 70s, “Universities, post-secondary training colleges and other forms of higher education actively discouraged enrolment of students with disabilities”.

Kath Duncan attended the University of Sydney from 1979 to 1980. For the most part she did not use her wheelchair on campus: “I stumped around more in those days than I do now,” she says. “Unless it’s changed heaps, it was abysmal for physical access.”

Of course USyd is hardly unique in this respect, then or now. Tertiary education in general is inaccessible on many fronts: poverty, rurality, Indigeneity, and disability are only some of the many factors that may keep otherwise eager students from enrolling in university. Sydney, specifically, is an accessibility hellpit. When visiting Melbourne I was flabbergasted by the functional public transport, the proliferation of decent curb cuts, and the generally higher commitment to meeting basic accessibility standards. In Melbourne, wheelchair users are frequent and unremarkable pedestrians. In Sydney, the sight of another wheelchair user is rare and kind of exciting.

I am a year younger than the Disability Discrimination Act (1992)(DDA), but the DDA is known to many in the disabled community as a “toothless tiger”. Unlike every other anti-discrimination law in Australia, the DDA has a clause for “reasonable exceptions”. This means that if a building, organisation, employer, or individual can prove that not discriminating against disabled people is too difficult, too expensive, or a cause of “unjustifiable hardship”, they are granted an exception to the law. Essentially this means that inaccessibility is the norm and disabled people are expected to sue if we want to access our environment on equal terms. Appealing to the DDA is rarely fruitful: more often than not claims are struck down and the complainant is forced to pay legal fees on top of that.

USyd violates the DDA in hundreds of ways everyday, but it’s impossible to file discrimination suits for every building on campus. For one thing, it would be even harder for disabled students to finish their degrees in between all the lawsuits, and for another thing, the courthouses are also inaccessible.

“I definitely limit my time at USyd due to its inaccessibility,” says Gabriel. “If I do have to go to USyd for whatever reason, I will opt to leave my wheelchair at home and instead use a cane or crutches because if I am using those, stairs and cobblestones are only a difficulty, rather than an impossibility.”

“I tried to get the lift upstairs to Manning Bar and spent a good 20 minutes waiting for the correct key to open the door, before being told that the security guard couldn’t find the correct key and I would have to take the stairs. That one instance of taking the stairs meant that I could not stand for at least the next three hours.”

“The stairs are a nightmare,” Saz agrees, stating that the University as a whole is “alienating as fuck”.

Accessible building codes have only been legally mandated since 2010, and it shows again and again:

“Of course we’re accessible, but we don’t have a lift or anything. We can carry you up the stairs though!”

“Yes we are wheelchair accessible, but you need to call up one of our staff members to unlock the goods and services entrance.”

“The performance is accessible, but the seats are built in so you will need to wheel in first and park your chair on the edge of the stage.”

“We are wheelchair accessible but there are several steps at the entrance.”

“We are accessible but not wheelchair accessible.”

“Yes we are accessible but we will need you to get out of your chair.”

“We want to be accessible but the building is heritage listed so we can’t install ramps.”

HELLONWHEELS

[Image: my own art, a digital collage of a street sign that says NO ACCESS with an arrow pointing to the right, beneath the traditional wheelchair symbol (the International Symbol of Access). Over the old symbol is a partially transparent glam punk rainbow version of the Accessible Icon Project’s self-propelling wheelchair symbol, with a spiky skull head and neon flames flaring out from the wheels.]

Noa Zulman, one of the current SRC Disabilities Office Bearers, says that “dealing day-to-day with disability in a professional environment becomes an all-consuming task”. Noa is determined, but her outlook is bleak. “As passionate about disability advocacy as I am, I really don’t think I could go into it professionally. It’s so draining and a constant demand.”

Still, even in a world where accessibility is the exception rather than the norm, USyd lags embarrassingly far behind when it comes to accessible infrastructure. It’s not for lack of goodwill. Well, actually, it is sometimes. This year, my professor refused to move his lectures to a wheelchair accessible building, despite having been informed about my access requirements before the start of semester. He had assumed I’d dropped out, because I hadn’t shown up to the room I couldn’t get into.

Ricky Buchanan graduated from La Trobe in 1998 and says little has changed since then. “People today are still fighting for exactly the same stuff we were fighting for twenty years ago” Buchanan says. “The technology has changed a bit, but the actual problems are basically the same: lecturers who don’t want to actually grant the accommodations that the disability services says you’re eligible for; disability services not understanding what’s actually needed; people feeling like accessibility is just ‘too hard’ and why should they change things for just one person.”

In theory, the University’s Disability Services should pick up the slack, but students are often left unimpressed.

“Like, sure, if you have a centrally timetabled classroom that doesn’t meet your requirements they might be able to help,” Anna explains. “But if you have two tutes back to back on opposite sides of campus, you’re shit out of luck.”

Elsa has similar qualms. “If you need something that wasn’t on the very short list of accommodations offered, it’s pretty much too bad,” she says. “Without the unit coordinator’s support, Disability Services’ abilities are severely limited. It’s exhausting and disheartening feeling like you constantly have to fight for accessibility. And it’s very isolating too.”

Jax Jacki Brown started studying at USyd in 2007, but left after a semester because the conditions were so dreadful. She visited recently for a guest panel during Disability Inclusion Week and told me that access is still “pretty poor”.

“People still routinely individualise disability as a personal problem and not systemic issue of rights and access and a fight against discrimination,” she says.

Many buildings do not have wheelchair accessible entrances, or wheelchair accessible amenities. Some buildings do not have elevators. There are several hydraulic wheelchair ramps, but they are usually either locked or broken, and nobody ever seems to know who keeps the key or how to contact them.

But these are not the only issues to contend with.

“The campus is huge and a nightmare navigating and cobblestones deserve to burn in hell,” says Flynn. “My bendy ankles hate cobblestones, especially since all the ones at USyd are on hills,” adds Sam. “I’ve twisted my ankles on them countless times.”

Other students agree: “murder on my ankles”, “lovely to look at, hell to ride over”, and “the bane of my life” are choice phrases. Evander tells me that “any form of bumps or cobbles were frustrating. I’d be carrying a hot soup for my lunch in one hand or on my knee and any bumps meant I got scalded a lot.”

Even the cobblestones, however, could be salvageable. “One of my favourite bits of inclusive design that I’ve seen was in the gågade (pedestrian-only city centre) in Copenhagen. The entire area is, of course, cobbled, but along each side of the street, they’ve placed a pair of tracks of smooth tiles, for wheelchair users to travel comfortably,” says Alex Haagaard, a writer and disability rights activist.

Online study is one option for students, but not an ideal one. “It’s really lonely doing online study,” says Hester-Henrietta. “A wheelchair means freedom, it means I can get out and do stuff, but online study cuts my contact from people. Chronic illness and disability meant that I lost a lot of friends or lost the opportunity to make friends in my teenage years as I had to drop out of high school, and I thought university would mean I’d be able to make friends, but because I can’t get around campus, I can’t make any now.”

For staff members, the situation isn’t much better. Dr Sheelagh Daniels-Mayes, a lecturer in Aboriginal education, is one of only eight blind and low vision academics in Australia. She estimates that she spends about 25 extra hours a week making up for inaccessibility. Turnitin and Grade Centre are both inaccessible for screen reading software, and PDF documents are “sheer hell”. And, unfailingly, the cobblestones. In order to avoid them, Sheelagh’s guide dog Nina insists on taking her on a roundabout route through the Law buildings.

The committee tasked with establishing a university in Sydney in the 1840s declared that they intended to create “a University which shall be accessible to all classes”. Later, in 1876, Dr Charles Badham claimed in his Commemoration Day address that the University of Sydney was “no inaccessible shrine for the glorification of a few”. And yet for the most part, this promised accessibility has failed to manifest.

The University of Sydney’s Disability Action Plan 2013-2018 aims to “incorporate the rights and opportunities of people with disabilities in all policies and planning” and to “provide an accessible built environment to everyone”. The plan also commits to developing a “best practice accessible environment” that is “not only based on meeting legislative requirements”.Such a sentiment is admirable, but falls a little flat considering that we don’t currently meet legislative requirements either. Perhaps the most promising aspect of the current Disability Action Plan is that it acknowledges that “we still have more to achieve in access and inclusion”, and acknowledges that accessibility is “both our legislative and moral duty”.

I love my university, but I cannot in good conscience recommend it to fellow disabled students. Hopefully this won’t always be the case. There are good people here. We are making our way forward, slowly and stutteringly, but we are getting there.

Still, if I end up losing it and taking a jackhammer to Eastern Avenue, Ed Roberts style, at least now you know why.

 

Gerhard Mantz, “Personal Risk”, 2009

Response to a lecturer’s reluctance to provide disability accommodations, and some thoughts about rip currents

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?”

Yikes.

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.

How-to-escape-a-rip

[Image description: anatomy of a rip current, with routes of potential escape.]

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.

Euthanasia, eugenics, & the legitimation of ableism in the progressive left

A week after the Sagamihara massacre, Q&A gave a platform to pro-euthanasia eugenicist/”ethicist” Peter Singer, an academic of Princeton University and the University of Melbourne.

Disabled activists Kath Duncan and Jax Jacki Brown were not invited to speak as authorities, but instead challenged Singer on his position from the audience.

In response to being challenged on his views about euthanasia and eugenics, Singer said

It is the parents and doctors making a decision in consultation. It is not some crazy guy going into a unit and killing people.

Of course, Satoshi Uematsu was not “crazy” – in fact months before the murders he was released from a two-week involuntary stay in a mental ward because his doctors found that he was entirely neurotypical and not experiencing any kind of mental illness. He sole “diagnosis” – if it can even be called that – was mild marijuana use. The involuntary institutionalisation came about because he had approached a politician with a letter outlining his plans for mass murder.

Uematsu’s ideology was not informed by mental illness, nor was it without context. We cannot look to neurodivergence as an explanation for his crimes, but rather to ableism, to the devaluing of disabled lives, to the view that disabled people are a burden on their families.

In his letter to Lower House Speaker Tadamori Oshima in February 2016 Uematsu wrote that

Thinking about the tired faces of guardians, the dull eyes of caregivers working at the facility, I am not able to contain myself, and so I decided to take action today for the sake of Japan and the world.
My reasoning is that I may be able to revitalise the world economy and I thought it may be possible to prevent World War III.
I envision a world where a person with multiple disabilities can be euthanised, with an agreement from the guardians, when it is difficult for the person to carry out household and social activities.
I believe there is still no answer about the way of life for individuals with multiple disabilities. The disabled can only create misery. [emphasis added]

In his book Practical Ethics Singer writes

When the death of a disabled infant will lead to the birth of another infant with better prospects of a happy life, the total amount of happiness will be greater if the disabled infant is killed. The loss of happy life for the first infant is outweighed by the gain of a happier life for the second. Therefore, if killing the haemophiliac infant has no adverse effect on others, it would, according to the total view, be right to kill him.

Singer claims that this quote has been stripped of context; his attempt to clarify that context, however, is almost worse. His website’s FAQ explains his position as follows:

You have been quoted as saying: “Killing a defective infant is not morally equivalent to killing a person. Sometimes it is not wrong at all.” Is that quote accurate?

It is accurate, but can be misleading if read without an understanding of what I mean by the term “person”… Newborn human babies have no sense of their own existence over time… So killing a newborn baby is never equivalent to killing a person, that is, a being who wants to go on living. That doesn’t mean that it is not almost always a terrible thing to do. It is, but that is because most infants are loved and cherished by their parents, and to kill an infant is usually to do a great wrong to its parents.

Sometimes, perhaps because the baby has a serious disability, parents think it better that their newborn infant should die. Many doctors will accept their wishes, to the extent of not giving the baby life-supporting medical treatment. That will often ensure that the baby dies. My view is different from this, only to the extent that if a decision is taken, by the parents and doctors, that it is better that a baby should die, I believe it should be possible to carry out that decision, not only by withholding or withdrawing life-support – which can lead to the baby dying slowly from dehydration or from an infection – but also by taking active steps to end the baby’s life swiftly and humanely. [emphasis added]

What about a normal baby? Doesn’t your theory of personhood imply that parents can kill a healthy, normal baby that they do not want, because it has no sense of the future?

Most parents, fortunately, love their children and would be horrified by the idea of killing it.  And that’s a good thing, of course.  We want to encourage parents to care for their children, and help them to do so. Moreover, in our society there are many couples who would be very happy to love and care for that child.  Hence even if the parents do not want their own child, it would be wrong to kill it.

In summary: killing non-disabled newborns is unacceptable because a parent somewhere would want them. Killing disabled newborns is acceptable because they are unwanted.

Frequently in the initial edition of Practical Ethics, Singer used the phrase “defective infant” to refer to disability. Singer’s own mild myopia is not grounds enough for him to consider himself “defective”, apparently because shortsightedness is not “significant” enough to affect quality of life. (He appears consistently unaware of the social model of disability.) Singer saves the epithets of “defective”, “low quality of life”, & “less than human” for conditions such as spina bifida, hydrocephalus, Down Syndrome, and brain haemorrhage.

These conditions are often screened for in pregnancy, resulting in would-be parents aborting otherwise-wanted foetuses. In Iceland nearly 100% of foetuses with Down Syndrome are aborted. In Western Australia the figure is 93%. Prospective parents are frequently encouraged to abort and denied access to information about the condition.

Of course anyone can abort a pregnancy for any reason, and nobody is obligated to complete a pregnancy to term. The fact that 45% of disabled people in Australia live in poverty is evidence enough to the fact that we are not given good infrastructural supports or assurance of adequate healthcare, so raising a disabled child can be difficult and expensive. (This does not generally apply in the case of intersex variations, another frequent target of selective abortion, where surgical interventions are often justified by bigotry rather than medical necessity.) Placing restrictions on individual reproductive freedom is not a solution to the problem of selective abortion, because the problem is not individual but societal.

The widespread expectation that parents will abort intersex or disabled foetuses betrays a chilling disdain for intersex and disabled lives.

Parents who choose to have children don’t get to decide if their child is disabled or not. It’s not up to them whether their child grows up to show signs of depression, anxiety, psychosis, connective tissue disorder, cerebral palsy, epilepsy, cystic fibrosis, cancer, fibromyalgia, dyslexia, chronic illness, rheumatoid arthritis, or whether they experience injuries leading to amputation or paralysis or the use of mobility aids. It’s also not up to parents whether their child grows up to be trans, or queer, or a sports fan, or an academic, or a eugenicist.

Unfortunately it’s also not up to disabled children whether the family they are born into is supportive or not. And with disability being widely represented as a burden and a misfortune, abled parents are encouraged to think of disabled children as an unfortunate and unexpected tragedy.

Rather than addressing problems of infrastructure, accessibility, and healthcare, we are encouraged to think of disability itself as the problem. Which leads to disabled people being the problem. And in a capitalist culture pushing the narrative of false scarcity, this leads to disabled people taking away resources from abled people.

Peter Singer has gone on record stating that “I don’t want my health insurance premiums to be higher so that infants who can experience zero quality of life can have expensive treatments.”

Abled people cannot determine the quality of life of disabled people.

The expense of medical treatments for disabled people does not make them any less necessary than medical treatments for abled people (which are no less expensive).

Interestingly, despite the claims he has made publicly about the moral use of wealth, Singer goes against his own ideology in his personal life: his mother has late-stage Alzheimer’s, and lives in expensive private nursing care provided by Singer. Perhaps “defective” disabled lives are only worth living when they are people that Singer knows and cares about. He is defensive about this perceived lack of consistency in his advocacy:

What is it that I am doing in relation to my mother that I should be doing differently in accordance with my philosophy? Am I supposed to be killing her? For one thing, I would end up in jail. She gets some pleasure from life, the pleasures of eating – rather simple pleasures. Why should she not continue to have those? Because it costs money to look after her! Yes, but there are other things. I am not living in dire poverty and giving everything to people who are starving to death.

In an ideal world, if I could legally… if there was a way, without punishment or whatever, of painlessly ending my mother’s life and then transferring the resources used to look after her to people who would otherwise die from malnutrition, of which there are many, I would say, yes, that would be a better thing to do. But that is not the situation either I or my mother are in.

Another passage in Practical Ethics states that

It may still be objected that to replace either a foetus or a new-born infant is wrong because it suggests to disabled people living today that their lives are less worth living than the lives of people who are not disabled. Yet it is surely flying in the face of reality to deny that, on average, this is so. [emphasis added]

It’s difficult to deny that Peter Singer and Satoshi Uematsu have similar feelings with regard to euthanasia, economy, and the value of disabled lives.

Singer is frequently cited as a moral hero of veganism. He wrote his thesis on civil disobedience, published seminal scholarship on animal liberation, stood as a Greens candidate in the 1996 election, and is a political advocate for famine relief. He is a recipient of the Order of Australia. He is Jewish, but has faced significant opposition from German universities, where his scholarship has been identified as far too close to Nazi ideology for comfort. Although German protestors consisted of disabled activists and anarchists opposed to Singer’s advocacy of what sounded eerily similar to the Nazi doctrine of lebensunterwenlebens, or “life unworthy of life”, in his descriptions of these interactions Singer casts himself as the anti-Nazi voice of reason, comparing the shouts of Singer raus! – Singer out! – to historical chants of Juden raus! – referring to Jewish people.

Singer often characterises opposition to his stance as led by Christians, anti-choice groups, and right-wingers,  despite the fact that much of his opposition has consisted of disability rights organisations including Not Dead Yet. He is not unaware of the widespread disabled opposition to his eugenicist views; in fact he has frequently engaged with disabled rights activists on the subject, most notably Harriet McBryde-JohnsonStella Young also wrote about the problem of Peter Singer.

Singer’s opponents are not located solely in the right, much as he would like them to be. Despite the fact that many consider him to be a hero of left wing politics, Singer’s ableism makes the entirety of his politics and academia suspect.

Widespread opposition from disability rights groups, however, is not enough to discredit Singer in the eyes of other progressive movements, including the Greens, animal liberationists, and vegans. Nor is it enough to prevent his alma mater, the University of Melbourne, from praising his reputation, listing him as one of their “distinguished academics”, or keeping him on as a Laureate Professor of their School of Historical and Philosophical Studies. The lack of solidarity with disability rights groups and the eerie toleration of murderous ableism by the left is heartbreaking.

Academia is terribly far behind when it comes to disability studies, disability civil rights, and basic cultural awareness around the lives and experiences of disabled people. It’s horrifying to contemplate fellow students attending a guest lecture that advocates for my death, led by a man who thinks that my life is not worth living, and that my way of being in the world is warped and lesser.

As a disabled student, the quality of my life, and my right to live, are considered apt subjects for academic debates held by abled people. My existence is cited as an ethical dilemma. Disabled people make up 20% of the population in Australia (50% in Aboriginal and Torres Strait Islander communities). Too many students are forced to sit through lectures and tutorials where our classmates are invited to question our right to existence, often without thinking about the likelihood of disabled people being present.

University environments in Australia and overseas are seeing a resurgence in eugenicist rhetoric touted as ethics, but now more than ever it is important that we recognise these views for what they are.

Singer is spreading hate speech, not scholarship.