Yasmijn Jagtenberg was in the middle of the exam when the fire alarm went off. As if a fire drill during an important exam was not strange enough, the situation turned even more distressing: no one was able to help Jagtenberg, who is in a wheelchair, evacuate.

The incident is in line with the trend of recent years. Back in 2019, Mare reported on a similar incident: deaf and hard-of-hearing staff were not alerted during a fire drill at the time. Four years later, the situation seems unchanged.

Leiden University may claim to be committed to inclusivity, but students with disabilities are often forgotten, they complain. They still run into countless barriers: buildings are poorly accessible, information on facilities is impossible to find and professors are not always willing to help.

Diametrically opposed

According to the Fenestra Disability Centre, around 10 percent of all students at Leiden University have a disability. ‘These are students who, as a result of this, experience inconvenience during their studies’, says Marcel Melchers of Fenestra.

‘That’s 3,300 students who want to study like everyone else. Although there has been progress when it comes to paying attention to students with disabilities, there is still plenty of room for improvement. There should be as little difference as possible between how students are treated across various programmes.’

Fenestra strives for more equal treatment, he says. ‘For example, it shouldn’t be the case that students are entitled to something at one study programme but not at another.’
But it is difficult to accommodate all students. ‘Sometimes, the wishes are very specific to the individual and may even be diametrically opposed to the wishes of other students with disabilities.’

Melchers finds it difficult to gauge whether students are satisfied with the university. ‘There is a regular survey and at Fenestra, we score between 6.5 and 7. Students do often say that they’re happy with our help and I hope that is true. They come to us with all kinds of requests, but unfortunately, we sometimes run into the limits of what is possible.’

‘Lecturers hardly have any empathy’

Stephanie Lones (26) studies English Language and Culture and has ‘a long list’ of chronic illnesses, autism and is hard of hearing.

‘Being chronically ill is a full-time job, I always say. All the searching takes a huge amount of energy, which I don’t have. As a student, all the responsibility falls on you. For example, I’m personally responsible for seeing to it that I can hear the lectures. I bring my own equipment - which, by the way, was stolen from my bag while I was talking to the lecturer in my first year. It’s frustrating that I have to arrange everything myself, as the university could also choose to provide an audio induction loop which I could connect my hearing aids to.

‘It was particularly difficult to hear lectures during the pandemic. I often didn’t understand the videos properly and not all lecturers were always willing to send me their text or provide subtitles. I think that’s just laziness. I’ve noticed that some of them lack understanding and have little empathy.

‘What would really help me is if it were easier to ask for extensions, if there were more flexible attendance rules and if I could be exempted from having to bring - very heavy - books. I’m not physically capable of carrying them, but lecturers still insist that I bring them to tutorials.

Dependent

‘I once asked if it would be possible to place chairs in the corridor, because sometimes I have to wait for the lecture hall to open. If I stand for too long, I faint. The response I got was that I have to bring a chair myself. I can’t carry a chair because then my shoulder will dislocate.

‘I do all exams on my laptop, but there was one test where I was required to draw for half of all the questions. I have weak connective tissue, so when I write by hand, it moves all over the place. That’s incredibly painful, but I still had to do it. I couldn’t use my hand for the rest of the day.

After the exam, I contacted that lecturer, but his response was that the number of questions that required drawing was not all that high. That really hurt me. He doesn’t have a disability; he has no idea. I know those silversplints (a type of splints, Ed.) around my wrists look like jewellery, but I wear them for a reason.

‘Lack of understanding is the root of the problem. How much understanding people show you varies greatly from person to person. That makes you extremely dependent on lecturers and that’s not a pleasant feeling. Due to bad experiences like this one, I’m sometimes afraid to ask for things.’

‘In case of a fire, I would've been in serious trouble’

Yasmijn Jagtenberg (37) studies Public Administration, is a Council member at the Faculty of Governance and Global Affairs and suffers from Ehlers Danlos syndrome, a genetic connective tissue disorder.

‘I’m in a wheelchair and there was nobody to evacuate me during a fire drill. It was only a drill, fortunately, but in case of a real fire, I would’ve been in serious trouble. When I told this story during the Faculty Council meeting, I could laugh about it, but of course, the fact that I was left sitting there in my wheelchair all by myself isn’t funny at all. During a fire drill, someone should be there to help me get out.

‘It’s not clear what I’m supposed to do in such a situation. The university’s information provision is problematic in general. I did a minor at TU Delft, where the accessibility information is listed on the website per building and per room. You see what they provide and what facilities you can arrange. I can’t find that information anywhere on Leiden University’s website.

‘Before I started my study programme, I spent a week running around The Hague with my mother. I couldn’t find any information about which buildings I had to be in and whether they were accessible to me. I was told beforehand that I would sometimes have to be in a building that was not easily accessible. But when I asked which buildings those were, no one could give me an answer.

Accessibility

‘The overall accessibility of the university could be improved. I study at Campus The Hague. The doors there are too heavy for me to open. Electric doors would solve this problem. But when I asked for that, I was told that it’s not possible due to safety reasons. What kind of trade-off is that?

‘When it comes to accessibility, small things make all the difference. I would be very happy with a threshold-free building. And even if there is some form of accessibility, I often have to take all sorts of roundabout routes just to find the lift to get to my classroom.

‘They’re doing the bare minimum, and I don’t like the idea of that. There is a fundamental rationale behind it that I would like to see changed, which is that I’m a person who needs to be facilitated to be able to participate with the rest.

‘A different view is that I am the way I am and that sometimes my environment just gets in my way a little. I don’t really believe in people having disabilities, but I do believe that your environment can limit you.’

‘I was supposedly running things for my fellow students’

Hannah (real name known to editors) has fibromyalgia, which causes chronic pain to muscles and connective tissue throughout her entire body. ‘She acted like it was shameful to have a disability.’

‘On 1 September, it was decided that online education would no longer be a standard option; this was four days before the start of the semester. I was accepted into two master’s programmes, but I chose Leiden because of the option to take the courses online. Because I can’t always come to campus due to my illness. No one from the university contacted me about this, even though they knew I wanted to use this option.

I was only told about it six weeks after the start of the semester, at Fenestra. That was very unfortunate, because if I had known within four weeks, I could still have switched masters. So now I have to consider whether I feel bad enough to stay home before every lecture.

‘During the pandemic, we saw how well online education works. But now that not everyone needs it any more, it’s suddenly no longer possible. By making these kinds of choices, you exclude people. It’s a sign that universities don’t want people with disabilities on their campuses.

Shame

‘Another reason why I chose the master’s programme in Leiden was the field trips. Two foreign field trips were scheduled. I talked to the lecturer because I can’t walk long distances because of my disease. That conversation went very well. I was going to arrange a wheelchair and she said everything would work out well.

‘But when she saw me in a wheelchair for the first time, on another field trip, her tone changed completely. One week earlier, I had missed her lecture because I was too ill. I’d asked my fellow students to inform her of my absence. I think that’s what caused bad blood. She asked - in a very nasty tone - why I thought I could join the trip if I wasn’t even able to send her an e-mail about my absence. I said that with the help of the other students, I’d be fine.

‘According to her, my presence would ruin the experience for the other students. I would be an embarrassment to the guides we would meet; apparently they’re all big shots. She also said I’d cause the whole group to be late for all the activities, even though I was, in fact, on time that day - like I always am.

‘This went on for twenty minutes. I had never been discriminated to my face like that before. She acted like it was shameful to have a disability. Like I should be ashamed of my body. I couldn’t say anything in return because I was in complete shock.

Regret

‘I already had everything sorted out for that trip, down to the last detail. I was going to go at any cost. Even if I’d be sick in bed for a week afterwards. But after this conversation, I no longer felt safe enough to be around that professor for a whole week. I decided not to go, even though I’d already bought a plane ticket. It hurts that I have to fight for something I’m simply entitled to. I paid the tuition fee so I also paid for those field trips.

‘I’ve been pushing my limits for almost a year now just to be able to do this master’s programme, with its compulsory attendance rules which sometimes forced me to choose between missing out on school or suffering terrible pain, because only one lecturer was willing to offer me online classes. As the year went on, I felt worse and worse. My mental and physical health is at an all-time low right now.

‘I feel angry. Maybe I’ll finish the master’s programme one day, but I want to go back to my old university as soon as possible. I regret choosing to study in Leiden.’

Update: the university website now lists more information on building accessibility.