The University’s Department for Students with Disabilities forwarded a request from a journalism student looking to interview students about dealing with their disability while in college. I volunteered as soon as I read it! The only way for people with disabilities to integrate into society as normal is by educating everyone about people who live with disabilities. Disability advocacy and alliance with those who do not yet have a disability has to become “common sense.” For this reason it is important to support students who seek to better understand how people with disabilities negotiate college.
It’s amazing how much more often this happens today than when I started college 7 years ago! Back when I started college, students didn’t seem to want to hear anything about disability as a social or political issue. Now, many are approaching me and asking to hear about it–even when it is not a class requirement!! I am not sure if this change in attitude is indicative of the progress of the overall Disability Movement in our country or if it is the result of my school developing degrees and liberal education classes that has appeared to open minds about disability? Either way I look forward to seeing what happens next.
Here is an edited version of how I answered the student’s initial questions:
Please remember “person-first language” when referring to someone with a disability. Think of the person first then what the “condition/problem” is. For example, rather than saying “disabled person,” say “person with a disability.”
As with any other minority group, only those with the disability can refer to themselves as disabled. Why? Because when people with disabilities call themselves “disabled” it can be empowering; whereas when a person without any disabilities calls a person “disabled” then the person with the power is positioning the member of the minority group–therefore making it a slur.
1. What is your disability and can you please briefly describe it? (If you are willing to share)
I have Systemic Lupus Erythematosus along with a number of other conditions. I was diagnosed with Juvenal Rheumatoid Arthritis at 18 months old. Since then I have been diagnosed with about 33 auto-immune conditions with their complications including the lupus, fibromyalgia, Sjogren’s syndrome, Raynaud’s syndrome, chronic pneumonia, chronic migraines, permanent vertigo, strokes, cognitive confusion, recurring pleurisy, recurring pericarditis, ADHD (yes, ADHD can be related to auto-immune issues).
Having an invisible chronic illness and going to school can be an amazing balancing act! Chronic illnesses such as these are sometimes called the “But you don’t look sick!” disease! (To help you understand how one lives with such conditions, go to butyoudontlooksick.com and look up “The Spoon Theory” by Christine Miserandino! Miserandino and the others at butyoudontlooksick.com were among the first to start to encourage young women with chronic conditions to advocate for themselves. Their encouragement has become a movement! )
Technically Lupus is an auto-immune disease where the white blood cells, the body’s defense system, attacks a person’s own RNA (i.e., ribonucleic acid, which is a molecule in the body that works as a messenger for DNA). Rheumatoid Arthritis results when the white blood cells attack a person’s own joints as if those joints were an invading disease. Having Lupus is like having Arthritis in every part of my body: since RNA is in every part of the body, with Lupus, the white blood cells attack not only the joints, but also muscles, skin, organs, blood cells, nerves, etc. Almost everything in the body might end up being attacked.
A good way to describe Lupus is think of the worst hangover you’ve ever had then add on top of that muscle and joint pain like you’ve been running marathons daily and injured every limb possible in the process. It’s extreme pain, extreme exhaustion, and feeling physically ill all the time (like migraines and nausea). For example, earlier this week I had to leave to puke in the middle of my meeting with a prof. But unlike a healthy person I had to “puke and rally,” not at a weekend party, but by going back to class after puking (and without an awesome reason like having had fun the night before ) Most normal kids don’t function when they are as sick as I am almost everyday. Most go to the ER if they wake up one morning feeling like I do daily! But I’m that sick on an ALL THE TIME basis, so I can’t let it be a reason not to get things done. It’s hard to balance classes, social life, sorority, work, chores, etc. when my body fights against me every step of the way!!
2. What challenges have you encountered at College regarding your disability?
I deal with a lot of people including College profs and administrators who don’t believe I’m sick. As they put it, I’m a good looking girl, I can’t possibly be as sick as I’m claiming?! But that’s why it’s an Invisible Disability.
Some departments and professors are unwilling to work with me, by adjusting to my needs with the necessary accommodations, for me to get through their class. I have actually had a prof tell me that my grade wasn’t important enough for them to take the time to meet with me outside of class or help me by providing accommodations! I’ve also had a prof tell me I don’t deserve accommodations, because his other students don’t get them, so it wouldn’t be fair. I tried explaining that the other students aren’t sick. The prof said that was irrelevant! I have had to medically-withdraw from classes half way through a semester when professors, who said they would work with my condition once I am in a bad Flare-up, decide they don’t want to put the time in… despite me being willing to do whatever they require that I can so I can finish their class!
3. How has this University helped you become integrated into college life taking into consideration your disability?
This university itself has done little, if I didn’t have as strong a personality as I do and have as many people built into my support system before going to this University, I would never have made it this far.
Though, Andy (head of the Department for Students with Disabilities, ODR) is a god-send! He is absolutely in the corner of every student registered in his department. He will try to find out whatever he can to help each student the way they need it. All of us, even with the same conditions, need different accommodations. Andy takes the time to find out what those needs are and figure out what the university is willing to provide, then he follows through to make sure it actually happens!
One problem I’ve found though, is that this university’s departments are not required to work with ODR if they choose not to. The department is allowed to put policies in place that undermine the power of ODR. The only things the departments can’t override are ADA (since that’s Federal), but even then you have to have the strength to fight for it, especially if it isn’t physically obvious that you need the assistance. When departments create policies that fight the spirit of ADA, they tie Andy’s hands behind his back. Why have a department to advocate for students and then allow for policies to be passed by departments that utilize loopholes?
My university recruits students with the claim that they will facilitate integration into campus life for students with disabilities. Once you get here, it becomes pretty obvious that their “help” is more theory than reality. When you’re talking about a group that is already so marginalized in our society as people with disabilities are, it is people like Andy who are the only thing standing between them and the roadblocks that stop students’ progress in college.
Though I am very lucky because I have managed to find a few professors and departments that actually consider educating their students to be a higher priority than sorting them through some sort of mythical “objective” grading system. Working with each student to find what that student needs to learn as much as they can is just what it means to be a teacher! Isn’t it?
The access bus is also a life saver! The women who drive that bus are amazing, caring, open, and understanding! They always ask how I’m doing and remember details about me and my schedule in a way that makes me feel like somebody has my back. I wouldn’t have made it to any classes freshman or sophomore year if that bus didn’t exist–let alone any Greek events! But, my university has cut the bus budget leading to a reduction in staff and, therefore, accessibility of the access bus, which often means the backlog of riders makes me arrive late to class. To properly aid students with disabilities on this campus, the access bus needs much more than it is now allotted.
4. Have you traveled before? Why or Why not?
I travel inside the states. I have to be near people, wherever I go, who live in the area and know me and know my health issues. That way if something happens to me I am close to help. Also barometric pressure change affects my health condition, so travel between states can be hard on my system anyway. I can’t get most of the vaccines required to travel to some places overseas, so I haven’t been since I was little. My sister travels overseas all of the time! She helps me feel like I am part of it by sending me designer earrings and panties from every country she visits.
5. Do you plan or want to study abroad?
Want? Yes, more than anything I would love to study abroad. I was pretty good in French before my bout of strokes. But there is no chance, with the difficulties I have encountered dealing with the University’s bureaucracy, that I will have the opportunity to study abroad. We can’t risk me being in another country and needing help with my health, as this college is so hands off when it comes to non-visible health conditions! My parents do not believe (nor do I) that I would have the assistance necessary if I developed severe health problems.
7th year Senior–cause I can only go part time and had to change my major so many times until I found a department that wanted to work with a person with a chronic illness. I have a lot of useless credits from before I found the right department!!