The Barriers I've Faced in Education as a Disabled and Chronically Ill Person
For me, the hardest thing about being disabled is the daily mental strain. It’s no secret to my close friends and family that I’m struggling a lot right now. Constant flares of my diseases have caused me to spend the majority of my summer either in the hospital or recovering from a hospital visit. I feel like I’m drowning like I’m in a huge pool of water that I can’t escape from and I’m watching everyone around me proceed in their lives where I am stuck in this pool of water that I’m desperate to get out of.
When you get a diagnosis of a disease or long-term illness, nobody talks about the mental struggle you’re going to face. How hard you’re going to have to fight for things other people take for granted. Mainstream education. A social life. Things people should have but I have to fight my body to let me have.
It took me four years of failure to finally get the equivalent of a secondary school certificate. Four years. I got it at 22, with blood, sweat and tears. Was it academically hard? No. And that’s the worst thing. My communications module’s tutor even told me that she felt so bad that I wouldn’t get straight distinctions in everything, even though I deserved it. Why? Attendance, due to health reasons. I was top of the class in exams, I was top of the class in assignments. But it was the fact that there were no resources for when I’d have a flare, there was no help for the times where my disease would prevent me from doing my best. I fought tooth and nail to get that certificate. When I got surgery to remove the endometriosis cells from my womb, I was right back in class a couple of days later to get the needed work done, despite needing to be at home to heal. I really messed my body up but I had to put my education first.
I always put my education first.
It hurts so much to watch my friends graduate from their degrees and move on to their master’s when I can’t even qualify into an undergrad degree yet because of what my diseases and my disability does to me. All I want is to go to university. It’s the biggest dream of mine but I feel like I constantly fail and have to pick myself up.
My last flare up of my systemic onset juvenile idiopathic arthritis caused me to be hospitalized for a week. I missed three days of my new course. And I was kicked out of the semester. I was so broken when I got this news while I was in the hospital. The nurses on the ward had to keep bringing me cups of tea because I was sat on my own, sobbing. This course hadn’t even been my first choice. I had originally planned to get into an art studio to do a year there. I got in, I had my second interview to confirm my place. What happened? Surgery, for my endometriosis. When asking to have another interview, the studio refused to speak to me.
I found this new course, which wasn’t in my field of interest at all but could help me get into an Arts and Humanities degree, so I applied and got in. But they didn’t understand disability at all. The first day in, my lecturer said straight up to me in front of a class of 30 students that she didn’t understand why I was there if I was that unwell. I understand that I have to accept that I’m disabled, that I’m unwell, that I’ll never get better and that there isn’t a cure for what I have. But I’m still a 22-year-old. I want a life for myself. As much as I love my mum and my baby sister, I really want to move out of my family home and live on my own. I want a life. I want to feel like a young adult.
I try not to get jealous but it’s so hard not to. People take things for granted. I would do anything to get into a degree. I would do anything to be able to afford a place of my own. To afford a carer who could help me on bad days. But I don’t. I have to just pick myself up and try again. And again. And again.
I feel like the system is so flawed. A lot of young disabled people just want a life of their own. But if they’re too unwell to finish mainstream education, what life will they have? I’m proof of this. I fought tooth and nail to get my qualification. One that wasn’t academically challenging for me but was so hard to complete because the system just doesn’t recognize disabled people at all. It doesn’t want to help us get an education.
Why do I have to constantly yell and fight for the right to an education? Why did I get kicked out of a course because I was in the hospital? I attempted to apply for the same course through distance learning, but it was literally over 10 times the price to do it online. Over a thousand euros. For the same qualification. Why is it that distance and blended learning, which is there for people who can’t be physically present for classes, costs extortionate prices?
Thankfully, I found a distance learning art history course which I will begin in a few days time, which has a weekly payment plan. But the system is completely flawed. Realistically I should be graduating from my undergraduate degree. But I’m not. I feel failed by a system that would rather me stay at home then put resources in to help my journey to education. Why do I have to fight so hard?
My graduation for my qualification is in two weeks time. I’m going to be so proud of myself that day. Because I know that I did my absolute best. I worry a lot that people think I’m lazy, that people think I don’t try. That I’m not intelligent enough to get a degree. I fear people think I’m not as sick as I am. I hide so much of my pain, constantly because I’m terrified people think I’m lazy or that I don’t need help.
I try so hard, every day. Every day that I get out of bed, that I put my dislocated hip back into place and carry on my day. Every day that I have to pretend that I’m not in agony. The days I have to change my entire outfit because I bled everywhere, but I still smile at everyone and pretend I’m fine. Those days I drag myself to the emergency room on my own because I don’t want to bother anyone.
Recently, one of my favorite television shows, “Voltron: Legendary Defender,” revealed the main character, Shiro, has a degenerative chronic illness. In the episode, he was so conflicted on whether or not he should pursue his dream. Because he was too sick to. This tiny scene, while inconsequential to a lot of people, resonated with me so much. It’s so hard, choosing which to do. Do you prioritize your health or your dream?
I spent a whole year fighting my body just to get that qualification. It resulted in me being so unwell that I spent my entire summer in and out of the hospital. My body is in shambles because I pushed it too far. But I prioritized my education over my health. When I saw that character choose his dream over his health, it resonated with me. This is the reality for a lot of people with disabilities, and it’s currently my life right now. All I want is to follow my dream. It’s everything I want. I just want to get a degree. I know I’ll succeed, eventually.
As the character in the show mentioned earlier says, “Patience yields focus.” It’s a good motto to have. We have so many obstacles stopping us from our dreams. We may be slower than abled bodied people in achieving those dreams, but if we’re patient, we have to have hope that they will happen for us.
Images provided by the author.