‘Universities don’t care about students with disabilities’: What it’s really like to study with a chronic illness

University, for many young people, is a rite of passage. While there are countless ways to start adult life, many people take those first steps by moving away from home and into college, to experience socializing, cooking, and to learn without parental support.

Wardah is 20 years old and studies Arabic and politics. She spoke to SCREENSHOT about what it was like to socialize as chronically ill student: “I had to push myself during the first year this year because I felt very lonely last year. It certainly made it difficult to make friends. People generally accept that I don’t drink, but the need for rest is often taken as an excuse for not really wanting to go.

Wardah’s experience highlights the limits of people’s understanding of illness – for some reason choosing to stay sober for mental health reasons is becoming normalized, but fatigue is still poorly understood. Refusing an invitation because you are “tired” is not often accepted. People assume coffee or a Red Bull will get you out of it, but when it comes to chronic illness, fatigue is actually fatigue – and it just can’t be cured with caffeine or a nap. .

It takes days to recover from exertion, which also makes multiple evenings a week unsustainable. Wardah continued, “I can’t have the carefree attitude that most students have. I feel different because of the amount of planning I have to do for things that other people see as an opportunity to let off steam.

Isara is 21 years old and studies psychology. She shared a similar experience to Wardah, “I always push myself too far because I still haven’t accepted that my body has changed. I always drink in the evening, even though it makes my symptoms worse. If I don’t, I feel too isolated and like a sick person who can’t drink or have fun. It seems that the pressure to be good, to be outgoing, and to be a party animal remains endemic to young people’s college experiences, despite society’s sense of overcoming that male culture that surrounded institutions in the past.

Although sometimes the social aspect trumps the college experience, studying and taking classes is supposed to be the real focus. Universities in the UK all offer some sort of service for students with disabilities, although the quality varies greatly by institution.

As a student with a chronic illness or disability, there are many paths you can take, but many of them are hard to find. Jamila, another disabled student, told SCREENSHOT about her experience: “There’s the support there if you know where to look. I’m learning new things even now so the signage isn’t there.

Many young people also come to college with undiagnosed illnesses and experiences. Endometriosis, for example, takes an average of eight years to be diagnosed – for many people who menstruate, they can be around 22 when given a name for the chronic pain they have experienced. Without words to describe your experiences and without documentation to prove your illnesses, it becomes increasingly difficult to know what you need and what might help you.

Wardah believes the lack of signage is intentional. “I don’t feel supported by my university. I think they’re doing just enough, but I don’t think they care about students with disabilities,” she shared. There seems to be a common thread among the people I interviewed, the idea that having their needs taken care of comes down to guest speakers and one-on-one tuition.

Wardah went on to say, “This semester I have two modules in which the lectures are either unrecorded or only available online for a few days. Of course, I can’t control how long my flares last or when I need more rest, so it’s not particularly helpful for me.

Enter Jamila, who is now on the other side. As a lecturer, she works with her university to meet access needs for herself and her students. She explained, “I know there is a choice given to us if we want to record our lectures, relating to intellectual property, which is valid, but if you cannot physically enter somewhere, you are missing something. thing. Again, if you fight for it, they can place things specifically for you, but access needs aren’t built in across the board. And that is the crux of inaccessibility in universities, the burden is left to singular students who are forced to ask for what they need, extra, instead of it being the norm to help everyone.

Jamila even said that as a student, attendance caused her anxiety: “I felt a lot of guilt for not having attended, especially during the first two years when I did not receive official support from the university. My presence was always signaled and I was fired at. Attending college seminars feels like a hangover from compulsory education, and measuring the ability of a student with chronic health conditions to complete classes as the equivalent of success in their college work seems not appropriate.

The company is inherently ableist— young people with chronic illnesses grow up feeling like a burden, an inconvenience, as if they didn’t look like their peers. Such discrimination may later manifest itself in a desire to blend in, not to fuss over things that might make college life less stressful for them.

Many of the introductory lectures you receive when you start studying focus on rigorous academic standards, controlled attendance, and the consequences of plagiarism. Much of this chatter, while important, can make students with chronic conditions feel like what they are asking for is extra, cheating, or asking for an easy route. It just isn’t, but persuading your peers and teachers is another task you must undertake as someone with a chronic illness.

About Antoine L. Cassell

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