“2017

Hell on wheels

The struggle for true accessibility continues 42 years after the first wheelchair user studied at USyd

Jacob Baldwin during the Ability Trek journey around Australia: 16,500 kilometres by motorised wheelchair from 1992 to 1996. Jacob Baldwin collection, National Museum of Australia. Jacob Baldwin during the Ability Trek journey around Australia: 16,500 kilometres by motorised wheelchair from 1992 to 1996. Jacob Baldwin collection, National Museum of Australia.

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.

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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.

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

A NO ACCESS sign with a wheelchair on it. The wheelchair is on fire and has a mohawked figure sitting in it.
Art by Robin Eames

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.