Diane at FWD (feminists with disabilities) for a way forward posts about How universities are failing disabled students (like me).
You’re intelligent, personable, and get good grades. It might look like higher education is a given. ... But it isn’t. Not when you have a disabling illness. Then, making it to graduation could be more challenging than you ever imagined.
I'm currently attending college while dealing with chronic illness and disability. My college is supportive of me and people like me, but even as supportive as they are it isn't quite enough and that support doesn't extend to everyone. (Though, to tell you how marvelous my Dean is, she swears she'll help me graduate even if she and the other non-traditional-aged scholars have to carry me across the stage at our graduation ceremony.)
Almost every syllabus I've read includes a passage instructing disabled students to contact Disability Services for accomodations. Accomodations. Like special chairs or ways to deal with learning disabilities. Concrete tools to fit concrete needs.But in my experience there isn't much at all, if anything, in place for students with chronic illnesses.
When I began school this past semester with a new diagnosis under my belt I did what I always do and emailed my professors, copying my Dean and the Disability Advisor. I provided a letter from my physician confirming my diagnoses. I told them I had Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) along with the Post-Herpetic Neuralgia (PHN) I've had for years. Nerve damage people can understand and can make accomodations for. We've done it before. I get extensions if I can't type, I once received permission to hand write a paper. PHN was an easy problem with a simple enough fix.
But what about CFIDS? This is the first semester I had a diagnosis for it and it seems no one knows how to deal with it. I spent easily two months "brainstorming" with all involved parties and still I feel like no one is truly satisfied. If I'm being honest, I think part of the problem is that CFIDS has a horrible name and a bad reputation. Teachers think I'm "tired" and are willing to understand if I miss a class here and there, but don't seem to understand that CFIDS is a multi-systemic disorder that can be (and is) tremendously disabling. I'm not just tired; some days I can't get out of bed at all, some weeks even, and the "immune dysfunction" part of the disorder means just what you think it means. I am immuno-compromised. I catch everything, and even when I don't my body attacks itself.
A key feature of CFIDS is post-exertional malaise. Basically, any exertion tires and weakens me out of proportion to someone without CFIDS. Not only that, it causes distinct physical and mental problems, such as respiratory difficulties, reduced heart rate, decreased cerebral blood flow, decreased cerebral oxygen, and impaired cognitive function. The recovery period can last anywhere from a day to weeks. Any exertion. Any. As in walking across campus from my car to my class. As in sitting in class and thinking. Any exertion.
Another key feature is brain fog. It includes being forgetful, feeling confused, difficulty concentrating and an inability to speak clearly.For me, I forget words and names, I switch words, and have intense difficulty reading and processing. It can be triggered by overexertion, fatigue, overstimulation, multi-tasking, stress, poor sleep, and some medications. Try turning your homework in on time when you can't even remember your professor's name, never mind concentrate on the material.
My college tries, but they have nothing in their toolbox to help with all of this. Part of it is lack of understanding of CFIDS (and I'd venture other auto-immune disorders) but what's the other part? I get the impression (at some times from some people, not a blanket impression) that I'm too sick to be there and so should just go home. But I'm not going to get better so going home is giving up, not giving myself time to heal.
We've come up with ways to make this semester doable if not particularly bearable, but the stress I have to deal with while constantly battling for my rights and explaining my disability over and over is, quite frankly, making me ill. I recently had a lumbar puncture and like any responsible student I contacted my professors prior to the procedure and told them I would be behind in schoolwork until I recovered. It took me a while to recover. I didn't get the spinal headache but I had pain from and incision site, weakness, and it took me easily a week and a half to begin to recover from the post-exertional malaise caused by the procedure. In the meantime I received an email from one of those professors I notified expressing "concern" that I was behind in my work. This floored me, honestly. I've been open, I've gone through the proper channels, I've been extremely clear about my needs and my schedule, and still I got that email. Someone who was familiar with my issues--as this professor was--should not have been concerned in any way.
So what's the problem? Well, as I said, this is the first semester I've had an official diagnosis for the horribly named CFIDS. We all know the stigma that disorder has, and while I don't know for sure that's an issue here, I do know that this professor acts as if I do not have a legitimate illness. Another problem, I think, is that I'm a non-traditional-aged student. As a schoolmate said to me, our school is not particularly well equipped to handle adult problems and issues. They assume every student is traditional-aged with traditional-aged student issues. (Which, by the way, is hugely insulting to the women attending my college. They are mature and hard-working, not teenaged slackers.)
I'm ill. I won't get better. I need accomodations, like time and flexibility, and since those aren't as easy to provide as something concrete like chairs and desks sometimes I'm treated like I'm just out of luck. I stand up and fight for what I need, but what about the people who don't or can't fight? What do they do?
You were too tired to get out of bed for two weeks?