on disability theory

Tonight I am lonely, so I am reading disability theory. I’ve been trying, over the past year or so, to read as much theory as I can. I want to be better informed, be a better advocate, be a better friend and ally to others in the disability communities facing different circumstances than mine, but above all I read disability theory because it validates me. It makes me feel less alone. Reading theory has helped me articulate the way I felt all through high school when people told me I didn’t look sick, discomfort and confusion giving way to clarity and anger. Reading theory gives me mighty words with which to tell people that their ideas are ableist, that their policies are discriminatory. Reading theory helps me understand my oppression, and leads me to the intersections of disability and other social identities. Reading theory connects me to the disability community. It gives me confidence. It gives me power.

College with Dysautonomia

I was asked about going to college with Dysautonomia a while back on tumblr, and I thought I'd repost the answer here.

The person said: Hey! I’m starting college in the fall and I’m worried about how my POTS will affect me. Any advice for how to feel better in college/effectively manage in while away from home?

Hey there!  First of all, congrats on starting college!  If your situation was anything like mine, just getting done with high school is an accomplishment.  

Super generally, take care of yourself.  College is a time when it’s really easy to not take care of yourself, and you will be surrounded by people not taking care of themselves, but take your meds on time, stay hydrated, sit/lie down when you have to, etc.  Establishing a fairly regular routine has been helpful (it’s not possible to get to bed/get up at the same time every day, but the closer you can get to it, the better you’ll feel.)  It’s also really important not to get bogged down in comparing your experiences to those of your fellow students.  There are SO MANY things to do in college, and you can’t possibly do them all, but sometimes it will seem like your healthy peers are getting to do EVERYTHING and you’ll be tempted to feel that you can’t do anything or that you’re not getting as much out of college.  And yeah, you’ll probably have to do less.  But it doesn’t mean that you can’t and won’t have amazing experiences.  Playing the comparison game will just bum you out (and in addition to in-school activities, this also applies to getting internships/whatever you’re doing with your summers).  I really agree with everything Mykaila said about self-care and being kind to yourself. 

Logistically, get your accommodations stuff squared away early.  You might want a single room (I found necessary but it really depends on how healthy you are).  You might need time and a half on tests.  Regardless of the specifics, you’ll probably need some sort of documentation.  (Oh, also - see if you can get early registration times guaranteed in your accommodations.  You’ll have much greater flexibility with scheduling (so you don’t end up having seven straight hours of class on Tuesdays and no class on Wednesdays or Thursdays) and you’ll be more likely to get classes you want.)

My school sends out emails to professors about accommodations stuff, but I also like to talk to them briefly after the first or second class just to let them know in person what’s up and get that whole “responsible student” image going on.  If they know you and know your situation, they’ll be much more likely to be understanding when things come up.  (Also, if you’re in a big class/the prof leaves right away, go to office hours.)  I don’t know what kind of a student you are, but it does seem to help that it’s clear that I care about my schoolwork (so this means also going to office hours to talk about papers, discuss something you didn’t understand in class, etc.)  Communication is pretty key as well.  If you’re going to be out of class, email the professor.  If you’re sick for a longer period of time, keep your profs in the loop so they know you didn’t just drop off the face of the planet.  (Also, I try to work ahead so if I get blindsided by a flare-up I’m not automatically behind.  Sometimes this works, and sometimes it doesn’t.  It’s worth it for the times it does work, though.)

More logistics: keep food in your room!  This seems like a no-brainer, but if you’re used to having a parent cook for you, especially when you’re not feeling well, it’s an unpleasant shock to the system when you realize that you’re in your room not feeling like you can make it to the dining hall and there’s no food around.  My friends will often bring me dinner when I’m sick, but it’s really important to be able to feed yourself regardless (you don’t want to have to depend on other people for food, because if they can’t bring any then you don’t eat and also they feel like it’s their fault).  I like to have instant noodles (very salty!) and instant bean soup on hand.  But really, anything that can be cooked with hot water (I have an electric kettle in my room - I’d highly recommend one… even if they are not allowed, ahem) and constitues a reasonable meal will work.  (Also, things that can be prepared with no water, like PB&Js and cereal, are good to keep around.) I also keep a stash of salty snacks!

Speaking of things to keep in your room, I make sure to have basic over the counter stuff in case I get a headache/cold (I didn’t initially think of this when I was packing because at home the Motrin, Benadryl, Sudafed, etc. live in the medicine cabinet, but at school it’s handy to have in your room).  Also, get in touch with the health center!  If they know who you are, they’ll be more likely to schedule you for earlier appointments/help you out generally.

A brief note on drinking: some of us POTSies do it, some of us don’t (I personally don’t because of meds and also I feel like my body couldn’t handle it), but if you’re going to, be extra careful (you know this…).  If you aren’t planning on drinking, don’t worry - there are a lot of fun things to do in college that don’t involve drinking, and I’ve never felt pressure to drink.  Some of my friends drink regularly, some of them never drink, most of them drink sometimes, but I’ve never had trouble finding non-intoxicated fun (also, hanging out with drunk people while sober can actually be very fun, as long as they’re not puking).

That’s all I can think of right now!  I’m sure I’m forgetting some things, but I’ll update the post if I have anything to add, and feel free to get in touch if you have any more questions/need anything else!  (I’m sorry if some of this seemed obvious, but I wanted to cover everything just in case!)  Going away to college can be nerve-wracking, but it’s also so much fun.  My Dysautonomia has actually improved in college - all of the short little walks plus a flexible schedule has meant that my stamina has increased dramatically.  I started out taking two classes, then took three my second semester, and have been full time (four classes) my sophomore year.  But also, if for any reason you have to take a break from school, remember that it’s not necessarily permanent.  Best of luck!

Le Eli-Che

I started my internship with the University of Parma disability office (called Le Eli-Chi) this week. The language barrier is, of course, difficult, but I’m excited to learn more about the Italian (and European) approach to disability. I didn’t really know what to expect going into it – a big university, I figured, would probably have more resources for disabled students than what I’m used to at my small liberal arts school back home, but considering how rarely students have one-on-one time with their professors here, I wasn’t sure how accommodating they or the system would be. I’m still not sure – I’ve only been to the office once so far – but there were certainly some differences that became apparent right away.

To begin with, disabled people in Europe are given a rating, a percentage that they are considered disabled. Rating disability on a scale strikes me as problematic, and certainly counter to the social, disabled by society, model, but I need to find out more about how the certification process works before I can delve into a deeper analysis.

I did learn, though, that if you are certified 66% or more disabled, university tuition is free (it’s worth noting that tuition here is substantially less than in the States – I was told about 1,000 euros – but that’s still a lot of money). I was unsure how I felt about this at first, and was worried this policy was implemented out of pity, but the fee exemption is explained in one of the pamphlets the director gave me: “This is not a privilege, but a means of reducing the disadvantages of having a disability.” Translation can muddle the exact implications, but I think it’s referring to systemic disadvantages, because the definition for handicap is as follows: “The term handicap, for who knows what cultural reason, has for many years had a negative connotation. It has been used synonymously with the term disability. Today the word handicap has a different connotation: a disadvantage a person with a physical or motor disability faces because his/her environment has been constructed for those without such difficulties.” It’s not exactly how I’d word it (although, again, this is from a translated version), but these are the ideas of the medical versus social model of disability.

Emilia, the director of Le Eli-Chi, is fantastic. She’s older, and Le Eli-Chi seems to be her life’s work. I’m still a little unclear about what I’ll be doing at this internship, but I’m going to be working with disabled Italian students, which should be fun. I met an Italian girl who was putting together a daily planner that all the disabled students receive, and from what I gathered the disability office runs sports programs for disabled students, so maybe I’ll be involved in those projects. Among the materials Emilia gave me on my first day was an Italian copy of the Convention on the Rights of Persons with Disabilities (Convenzione sui Diritti delle Persone con Disabilità), and I was reminded that it was actually ratified by Italy (and most of the rest of the world). I’m far from ready to make grand pronouncements about Italian attitudes towards disability, but in a country with ridiculously corrupt politics, at least they ratified the CRPD.