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.

Accommodations, Italy, and “Becoming My Disability”

(Just a disclaimer: this is a bit rambling.)

Sometimes when people ask me what accommodations I need, I find it difficult to answer. Depending on the situation, my only accommodation may need to be an understanding that I’m going to be tired sometimes and that I might have to miss activities/classes on occasion. That’s basically asking for flexibility, and while you can do that officially (it’s in my accommodations plan at school), people can have issues with the lack of specificity, both in agreeing to grant the accommodations and in actually following them (“But I am being flexible,” says the professor who gives you two extra days on a paper when you’ve been out of class for a week and still have the book to read.)

Some of my accommodations, however, are more concrete: a single room at school so I can rest, for example, and not having to stand for long periods of time. That last one presented me with a problem recently.

On the busses in Parma, I’ve been fine, because there are usually seat available, and when there aren’t I am standing for maybe seven minutes, maximum, which I can handle (I should note before I go on that walking is usually better for me than standing, because walking at least gets my blood flowing while standing allows it to pool and exacerbates my symptoms).

A few weeks ago, though, when I went to Carnivale, we got on the connecting train from Bologna to Venice and discovered that there were no seats available. The entire train, in fact, from the carriages themselves to the outer spaces near the bathrooms, was packed. The train ride was two hours. While I am sometimes able to stand for that long, it’s very unpleasant, and I knew that I had a lot of walking ahead of me in Venice. I considered trying to ask someone to give up their seat, but I figured the odds of someone giving up their seat to a visibly able-bodied American speaking poor Italian and claiming to have a disability on a two hour train ride were slim. I face enough skepticism in my native country, speaking my native language. I really didn’t want to have to deal with doubting faces and a language barrier. It also occurred to me that I didn’t even know if there’s a culture of giving up seats in Italy, and furthermore, while I probably could have strung some sentences together, I wasn’t 100% how to explain the situation in Italian. I suppose basic language skills in a foreign country go beyond ordering in a restaurant when you’re disabled – you also have to know how to explain your disability.

Ultimately, I ended up sitting on the floor of an outer train compartment, squished in a corner, having to readjust anytime someone passed through the area. The other students on the program were really great about it, checking in with me regularly, but I was still fairly uncomfortable. After about 45 minutes, though, the little girl who was perched on a pull-down seat left the train with her mother, leaving it free for me to claim. But that was just luck – I had fully expected to sit on the floor for the entire ride.

I asked an Italian friend afterwards if she thought someone would have given up their seat, and she said she didn’t think so. They might not have believed me, she said, and even if they did believe me, they probably wouldn’t have wanted to stand for two hours, regardless of whether I needed the seat more than they did. They would have looked at me and seen a healthy-looking young person, and their gut would have told them that I was fine without a seat.

There are certainly privileges invisibly disabled people have over visibly disabled people (and of course there is not always a clear divide between the two) – we often get to choose who knows we’re disabled, and have more control over how they find out. We don’t get stares. But there are downsides, chief among them being the recipients of a tremendous amount of skepticism and constantly having to assert our identities as disabled people. I’ve had so many people tell me they forget I have a chronic illness and expect me to take that as a compliment. Just the other day, I was on a bus with a girl from my program when two women came on. The elderly one sat down, and the middle-aged one stood by her. The girl on my program mouthed for me to get up, but I didn’t, because I was tired and the middle-aged woman did not indicate that she wanted the seat (if I’m feeling ok to stand, I give up my seat to those who ask because I figure if they ask they probably need it more than I do in that moment). I told the girl that I wasn’t going to get up, that I sit when I can because of my illness and she laughed and said that she had forgotten about my illness because I didn’t allow it to consume my life. I didn’t have the spoons to explain to her why the situation upset me, but it did.

I’ve talked before about the whole “don’t become your disability” and “I’m glad you’re not letting it take over your life” thing, but I just want to mention again how much it bothers me. For three years in high school, I woke up in the morning, went to the basement, watched tv all day, maybe went to a doctor’s appointment, maybe had an hour of class with a tutor who came to my house if I was feeling up to it, and went to bed. Was I becoming my disability because my health was so poor that I didn’t leave the house for weeks at a time? Am I becoming my disability now because I spend so much of my time thinking and talking and writing about disability? In case it’s not clear, the answer to both of those questions is no, but as I’ve said before, they’re the wrong questions. Why are we so worried about people “becoming” their disabilities)? Is it because we’re scared of disability? Is it because we want disabled people to try to pass, to try to be “normal,” to make life easier for those who are able-bodied?

 If I claim my disability identity and call you out on your ableism, does that make you uncomfortable? 

Venice

I was in Venice last weekend for Carnevale (which, oh my god), and I snapped this photo:

[Image description: A sticker on a ramp fills most of the frame and reads “Città Di Venezia" in smaller white letters and "Accessible Venice” in large yellow print.]

Walking around the city, Venice sure didn’t seem very accessible – so many bridges with stairs, a few streets so narrow that a wheelchair definitely wouldn’t fit – but apparently the city has been doing a lot to increase its accessibility. The water taxis are accessible, and of course the lack of cars helps with safety. I took the above picture on a ramp along the main promenade. The Italian girl I was with told me they installed the raised ramps in case of flooding, but of course they also help make a major thoroughfare accessible.

Travel, part 2: Advice for flying with Dysautonomia

Flying with a chronic illness is one of my very least favorite things, but going to school 3,000 from home and a general inclination towards seeing new places makes it an inevitability for me. Having flown to and from school so many times now, I have my routine down to a science. You’ll obviously have your own preferences, but here is what works for me.

• Eat something and take your meds as soon as you wake up, even if it’s four in the morning. I once neglected to take my medicine until after I was up in the air, and that was a very unpleasant experience. If you’re switching time zones your medicine schedule will be thrown a little off any way, so you might as well get your Florinef or Midodrine or what-have-you in your system as soon as you can.

• Drink water constantly. This seems like such a no-brainer, but it’s easy to get distracted and forget. I bring two empty water bottles in my carry-on and fill them up from a water fountain once I get through security.

• Wear compression stockings. If you read Young People WithDysautonomia, you know that I am a little bit in love with compression stockings. Well, I am doubly in love with them for planes. There are people without chronic illnesses who buy compression stockings just for plane rides, so clearly they are a must-have for chronic illness folks.

• Bring snacks (snacks on snacks on snacks). I’m a fan of sandwiches, but fruit is also good, especially when there’s turbulence. And bring hand sanitizer! Plane germs + weak immune systems does not a good match make.

• If there is turbulence and your symptoms start flaring, the best thing you can do is to breathe deeply and sip water. I also order a sprite from the flight attendants in an effort to preemptively settle my stomach, but I’m honestly not sure about the efficacy of that approach.

Once you’ve landed, give yourself time to recuperate before you dive into a mess of activity. And after you’ve rested up, enjoy your vacation! 

Update from Italy

Hello, hello! I’ve been in Italy for the two weeks – I’m studying abroad this semester! – and haven’t been interneting much, but I wanted to share this photo. It says “Lift for Disabled” and I took it at a medieval castle. The castle also had wooden ramps over the stairs in each room. And again, this was at a medieval castle. A medieval castle on a hill. So when restaurants say that they can’t renovate to provide access because it would “ruin the spirit of the place” or when a hair salon refuses to provide disabled parking because “no one with a disability ever comes here,” I have think that maybe they just don’t care about disabled people, hmm?

There is no excuse for inaccessibility. 

[Image description: Two white signs are posted on orange construction fencing. One reads "vietato l'accesso, lavori in corso," which means "no entry, work in progress," and the other reads "ascensore per disabili," which means "lift for disabled."] 

Disability at Scripps

The Dean of Faculty at Scripps asked me to write something up on disability at the college. Here it is.

Scripps’s biggest problem with disability is ignorance, a systemic ignorance that renders disability all but invisible. All students, disabled and able-bodied, should be fully integrated into campus life and have equal access to an excellent education, but the ableist attitudes that pervade the school have led to the isolation and exclusion of disabled students. Ableism, or discrimination against disabled people, is, like other forms of social prejudice, institutionalized, and little is being done at the moment to combat its presence at Scripps. As a school committed to fighting racism, sexism, classism, homophobia, and heterosexism, Scripps must also work against ableism in order to fulfill its stated mission of inclusivity.

Scripps’s approach to disability currently begins and ends with accommodations. This is harmful, both because there is so much more to be done and because the accommodations process is problematic. Students face a great deal of skepticism while trying to secure accommodations, and the heavy reliance on documentation does not take into account the extensive time and money obtaining a diagnosis can require.

Having gone through the process, students may still encounter professors who do not honor their accommodations. Furthermore, the mindset that accommodations are special privileges rather than an attempt to level the playing field is not unusual among professors and students. Comments from students such as, “If I had extended time I would have also gotten an A” betray an ignorance of disability that makes the experiences of disabled students very difficult. Even well-meaning professors sometimes inadvertently do or say ableist things, and the lack of training for faculty members on these issues is indicative of the low priority the school places on disability.

Beyond accommodations, there is no conversation at Scripps about disability. The community as a whole functions on the medical model of disability, which theorizes that disability is a personal and private problem that is the root of the difficulties that disabled people face, rather than the social model, which is supported by the disability community and states that most of the pain and suffering disabled people encounter is due to an ableist society. There are brilliant professors at Scripps, and few of them have heard of this basic tenet of critical disability studies. Therefore, disability rarely comes up in classroom settings. Far more common are ableist comments from professors and students, which places disabled students in the uncomfortable position of either constantly calling out problematic comments or letting ignorant statements go by unquestioned.

In conversations about social identities, ableism is either absent or included as an afterthought and seldom discussed. There are no disability studies classes, and senior staff members have dismissed the need for a disabled student space. But for a brief nod to ADA compliance, disability is not mentioned on the website, and it is never spoken of during prospective student tours. Disabled students have few forums in which to explore this aspect of their identity, and this needs to change.

Scripps is actually in a very good position to become an excellent school for disabled students. The open-minded and ever curious attitudes of many professors and students suggest that the community would be receptive to and supportive of trainings, workshops, critical disability perspectives, and increased resources for disabled students.

Ally trainings for professors and students are essential in making the school a better place for disabled students. There is a whole host of steps professors can and should take, ranging from the simple (placing an ADA notice in a syllabus and making an announcement about disabilities on the first day of class) to the more complex (increasing their knowledge of critical disability theory and including relevant material in their classes), and regular trainings by professionals would facilitate this. The option of ally training for students (and the inclusion of disability issues in wider ally trainings) would enable the student body as a whole to become more educated and more inclusive.

Space for disabled students is also key. A Disability Resource Center is in the works, which would make an incredible difference in the lives of disabled students. The DRC, in addition to housing professional staff members who could facilitate the aforementioned trainings and support disabled students, would be a much needed safe space for disabled students at the Claremont Colleges to gather, have discussions, and become empowered. An effective DRC would include resources like books and movies, and should host programming that would enhance the experiences of disabled and able-bodied students alike. The center should also work with other offices at the 5Cs like housing and study abroad to make sure disabled students are in a position to make the most of their time in Claremont. The student-run Disability, Illness, and Difference Alliance (DIDA) would be housed in the DRC, and student leadership could hold office hours in the center for students to come in with any questions.

Including the voices of disabled students on committees is also important, as are the funds and initiate to bring guest speakers on disability to campus. One of the simplest steps to increase awareness is providing venues for disabled people to tell their stories and welcoming their input on larger college issues. The appointment of a disability representative to the President’s Advisory Committee on Diversity and Inclusivity (PACDI) is a good first step, and one that should pave the way for greater representation to come.

Disabled students would also benefit from a mentoring program, which would be opt-in and could be run out of the DRC. At the moment disabled students have few opportunities to meet each other, and a mentoring program would help empower disabled students by connecting them with people who understand their circumstances and have experience self-advocating.

Currently, the DRC is on hold because of finances, but it absolutely must go forward as originally planned. Simply put, disabled people are no strangers to the excuse of money. It has been used to deny access and resources to disabled people time and time again, and it would be a shame for the Claremont Colleges to follow in that despicable tradition. It is not that there is not enough money for the Disability Resource Center; it is that certain people do not believe disabled students are valuable enough to spend what needs to be spent in order to create a space that will really make a difference. At this time, the vast majority of money being spent on disabled students is being used to meet a legal minimum of providing accommodations. If the money being spent on the DRC seems extreme, it is only because the Claremont Colleges are doing so little right now.

Finally, Scripps should begin offering disability studies classes, with an eye towards eventually having a disability studies major. Scripps has the opportunity to be at the forefront of a developing field, and it would benefit both the students (disabled and able-bodied) and the institution as a whole to begin exploring disability from an academic perspective.

Scripps has a lot of work to do in the realm of disability, but as a small school with not insignificant resources, it has both the ability and the obligation to begin making changes. Disabled students enrich Scripps College, and the more disability is viewed on campus as a normal part of human diversity, the better off the college and all of its students will be.