I have been stuck outside many doors in my life. I do not mean figurative doors, though I could probably expand on that, but literal doors. The door to the kitchen in the house I live in; the door to the Montague Place entrance to the British Museum; the multiple fire safety doors that block off access to most buildings in the U.K. Worse than doors by far are stairs. I’ve lost count of the number of times that I’ve gone to a restaurant and discovered half-way through the meal that the bathroom is downstairs. Inevitably, I suppress my bladder’s yells of discomfort rather than face the humiliation and pain involved in hobbling up and down a simple flight of stairs. Situations of this sort are all too common, and they make most forms of socialising or travelling a far fetched dream. The fact is that doors and stairs are everywhere. As such, whole arenas of life are closed off to those who cannot navigate a flight of stairs or open a door.
When taking the lift, well meaning strangers often remark that I should be taking the stairs. While I understand that they’re simply making conversation, these sort of comments do strike a nerve. Someone my age should be able to take the stairs. But I can’t. Even worse, people rarely realise that I can’t because there is nothing about me to suggest that I am disabled. This also makes it difficult to push for specialized access – there are always awkward questions and questioning stares. How can I explain to sceptical observers that I, an apparently healthy-looking person, am in fact deeply ill? How can I tell them in terms they will understand that I can’t make it up a flight of stairs without help? Many chronic illnesses are invisible. They leave the sufferer with a host of physical symptoms, such as extreme fatigue and pain, that makes most daily task difficult if not impossible. But they can’t be detected at first glance, or even on closer inspection, so they are ignored.
Students with chronic illness often find themselves abandoned by overworked, underfunded or non-existent university disability services. Many universities don’t provide any support to the chronically ill. Even if you have a valid medical certificate, they may not regard you as deserving of any support. At the institution where I took my undergraduate degree, I was expected to find the disability service myself (a surprisingly difficult task). They did not contact me; I contacted them. Thus began a painful back-and-forth discussion that lasted a few weeks. Ultimately, I decided against making use of the university’s disability service. Instead, I chose to ‘go it alone’. This was hardly an ideal solution – but it was the only one available to me given the university’s reluctance to provide proper support.
In the end, I managed to make it through my undergraduate only after leaving my degree for two years after being failed missing my final exams after contracting measles due to an underactive immune system (documentation was sent to my department but was not considered a sufficient reason to be allowed back in the programme). When I returned, I had to restart my degree as the two years that I had already spent as an undergraduate were seen as void. The system had not changed. I remember being told by a lecturer that ‘everyone gets sick and you just have to cope’ after returning from an extended absence due to pneumonia. This constant fight to be recognised when your body is already at war with itself is damaging draining. It is the reason why chronically ill academics and students often keep silent about their conditions and carry the burden of missing class and work alone (often in the face of accusations that they are lazy or flaky) or leave the field.
At Oxford, the situation is better. Chronically ill students can disclose their medical condition to the Disability Advisory Service (DAS) when they accept their offer. Then they can discuss their needs with someone at DAS before they arrive at Oxford. The process is more streamlined and helpful than any I have come across before. While my experience with the DAS has been positive and I have greatly appreciated their support, department and colleges are not always so helpful. Disabled accommodation at Oxford is a rare find, and disabled accomodation for an invisible illness is alloted last, hence my frustrations with an unopenable kitchen door (my fingers and wrists are too weak to open it on most days and it is extremely painful to do so on the days that I can). Departments may also not be as accepting of your disability as the disability service since departmental staff lack the training of those who work for the DAS. No allowances are made for the extra difficulties that disabled students face – extensions are often refused and access concerns left unaddressed. They are expected to perform at the same level as their able-bodied peers but little additional support is provided to them.
Most of the problems centre on the lack of support structures put in place for departments and colleges to assist students with chronic illnesses. But there’s also a lack of understanding, bordering on apathy, towards students with invisible illnesses. ‘We all get sick’ and ‘You don’t look sick’ are regarded as acceptable reasons for hindering or excluding students who are academically equal but not able-bodied. This mentality must change before students like myself can enter higher education on an equal footing with able-bodied students. At the moment, it feels as though we are fighting our bodies and our institutions in a war on two fronts.
Photo: Uwe Kils