On body love/hate/acceptance

I wrote this in response to the dueling pressures I feel concerning my body image - a mainstream feminist movement that demands I engage in body love and a chronic illness community that often conceptualizes being sick as a battle against the body.

i. For a really long time I felt like my body had betrayed me. My physical symptoms, I thought, robbed me of my independence and my personally. I was so invested in my self-image as an athlete, as a goofball friend, as a top student. Those things made me feel good about myself, and how could I be an athlete or a goofball friend or a top student when I was stuck in bed all day? I was convinced that the only way I could really be me again was to get better, to be healthy. Of course, that wasn't true (and also, it was impossible - they don't call them chronic illnesses for nothing), but I couldn't help but feel like my sick life wasn't my real life, and that real life had just been put on hold for a while.

ii. I dated a boy who spoke a lot about attachment, about how being attached makes people miserable. Initially, I was put off by this. I am attached to my family, to my friends, I told him, and they are constant sources of happiness. But I started thinking about attachment and identity, and the concept clicked. I realized that I was too attached to my ideas of myself. More specifically, I was placing too much stock in my ideas of who my best self was, and under what conditions she could exist. The epiphany was simple: I am still me. Even if I can't do all of the things I used to do, I am still me. My life is not on pause. My actions and self-worth should probably reflect that.

iii. When I read sprawling rants about how someone's chronic condition has taken their life away, I am empathetic. People are entitled to their emotions, and the symptoms of these illnesses are no joke. If someone wants to express frustration about a skyrocketing heart rate or fainting every time they take a shower, they can and they should. Honestly, when I'm up to my eyeballs in pain or can't walk across a room without feeling like I've run a marathon, I do it too. Sharing is self-care. But I want to acknowledge and I want to celebrate that living with a chronic illness has made me more empathetic, more patient, more flexible, and better equipped to handle disappointment. It’s given me perspective and has made me more understanding about the suffering of others. I used to recognize all of this, but maintained that I would give it up if I could have my health back. But here's the thing: I like who I am, and who I am is a product of many, many experiences, including my illness. I used to visualize my Dysautonomia as a tumor attached to my body, connected to me but not really part of me. But that’s not right. I cannot separate myself from my illness.

iv. I have a lot of issues with the YOU MUST LOVE YOUR BODY rhetoric, chief among them that it tends to focus on appearance. And you know, I'm often in a fair amount of pain. I'm often exhausted, and when my symptoms are flaring I have trouble articulating my thoughts because my brain can't come up with the right words and my tongue can't get around them fast enough. But when it comes to physical appearance, I've always been more or less on board. The militant cry of LOVE YOUR BODY doesn't have room for such nuances, though. It doesn't consider them. 

v. After years of being pushed in one direction and pulled in another, I have come to accept my body for what it is. Body acceptance. I think that should be the goal. Not a revolutionary thought, to be sure, but it's taken me quite a while to get here.

vi. I’m not telling anyone how to feel about their bodies, or that they shouldn’t be angry if they feel angry. This is not clear cut, and I do sometimes wonder if my body acceptance has come in part from my physical symptoms improving. It's hard to separate physical progression from emotional progression, never mind that I was 14 almost 15 when I got sick and now I'm 20 almost 21. I do wish the chronic illness community could move away from the battle mindset, though. The medical model of disability says that we are tragic figures who only have value to society if we are "fixed." Do we really want to encourage that? Do we really want to live our whole lives wishing everything was different? That we were different people? It’s ok to be discouraged, to be disappointed, to be upset with our bodies without acting as though they are separate entities with which we are at war. We’re not fighting our bodies, if for no other reason than how could we ever win?

First week of AAPD

I am bursting at the seams, over the moon happy right now because my AAPD internship started on Sunday and for the past five days I've been non-stop talking about disability and learning about disability and meeting people whose jobs it is to speak and educate and advocate in the field of disability. It's amazing. When I'm at school, I'm That Person, the one student who talks about disability. I am by no means the only person at the Claremont Colleges who knows or cares about disability issues (though there are regretfully few of us), but I am the most outspoken, and, as president of the Disability Illness and Difference Alliance (DIDA), the most active. So to come here and be surrounded by people who are just as engaged, just as passionate, and just as informed, if not more so, is kind of incredible. My roommate, Karin, is already becoming a good friend, as are a number of the other interns. Everyone in the program is so interesting and has so much to offer, and it really does feel like I'm meeting people that I could be working with for the rest of my life. In addition to the interns, the program has given us the opportunity to meet leaders in the community, people who are doing the work that I want to do, trailblazers who have made my presence here possible. Last night I sat with about five other interns and we listened to Yoshiko Dart tell the story of the ADA. It doesn't get better than that.

I should get some rest now, because one of the side effects of this program is that all I want to do is talk about disability with all of the other interns all the time, but I'll be posting more going forward. I start my internship on the Hill next week, so that will be an exciting new adventure!

Some of us interns with Yoshiko Dart!

[Image description: A group of young people, some of them standing, some of them using wheelchairs, crowds around an older woman. On the right side of the picture is a middle-aged woman, also a disability rights advocate.] 

Last day at Le Eli-Che

Yesterday was my last day interning at Le Eli-Che. Daniele and I entered new student information into the computer, and then I took some pictures.

Here's Massimo, who runs Sport Ell-Tutti:

Here's my buddy Daniele. We worked together and he translated for me when my Italian proved insufficient.

Here I am with Emilia, the fearless director of Le Eli-Che:

And some more pics of the office:

I've had such a great time interning at Le Eli-Che. This semester has been filled with new and exciting experiences, and soaking up perspective in this vibrant little office has certainly been one of the highlights.

 

More on Le Eli-Che

It’s a bit hard to believe my time in Italy is almost over, but in two week’s time I’ll be on a plane to Paris, the beginning of my final adventure of the semester. This impending departure means I’ll also soon be saying goodbye to Le Eli-Che, the University of Parma Disability services office where I’ve been interning these past few months. Since I haven’t updated the blog in a while (apparently traveling and learning Italian takes up a lot of time), I thought I’d give a run down first of what I’ve learned about the Italian approach to disability, and then discuss Le Eli-Che more specifically.

To get a diagnosis in Italy, a person goes to their doctor and is either certified as able-bodied or disabled. If you’re diagnosed with a disability, you receive a certificate with the percentage of your disability. Ideologically, as I mentioned before, saying someone is such and such percent disabled seems problematic, but in practical terms, the disability percentages correspond to various other laws. If you are certified 66% or more disabled, for example, university tuition is free. The other law relevant to university students is 104, which guarantees equipment and accommodations at the university (this is also the law that made the creation of Le Eli-Che possible, but I’ll go into more detail there in a bit).

The disability certificates also impact employment laws. Based on your percentage of disability, people are deemed able-bodied, disabled but able to work, and disabled and not able to work. With a disability percentage of 45% or greater, you are eligible to fill one of the jobs in the 7% reserved for disabled people. There are other laws, I was told, but these are the most significant. Most of Italy’s disability laws were passed in the last 15 years, but despite being so new, they actually seem to be working out pretty well. Emilia Coronna, the director of Le Eli-Che, said that Italy is probably the most advanced country in Europe as far as disability is concerned. It’s certainly ahead of the US.

Le Eli-Che was started by Emilia in 2003 and expanded to include all services for students with learning disabilities (or DSA, as they’re called here) in 2010. Just this January the office began being able to diagnose learning disabilities. Three staff members – a speech therapist, a psychologist, and a social worker – convene to discuss cases and diagnose students. There are about a dozen staff members total (including some disabled staff members), serving a student population of around 1,000. Unfortunately with my schedule I never got to meet everyone who works there, but in addition to the people mentioned above I spent time with the LIS (Italian Sign Language) interpreter and a sports psychologist who runs Sport-Ell-Tutti, the sports program for disabled people in Parma.

Sport-Ell-Tutti is a really neat program where Le Eli-Che connects with sports centers and arenas around the Parma area and arranges for disabled people to play sports on a regular basis. It started about five years ago when Massimo, the sports psychologist, took a group of disabled students ice skating, and has since expanded to involve many sports (just off the top of my head I recall basketball, soccer, skiing, race car driving, golf, swimming, football, tennis, and hockey) and is now available to any disabled person in Parma who wants to participate. Massimo first meets with the person and works with them to figure out which sport would be the best fit, taking into consideration their preferences, their disability, and which sports centers are accessible, and then he checks in every six months to see how they’re enjoying themselves. The program is free for participants and Massimo said that around 40 different sports centers/organization in the Parma area host disabled athletes.  

In addition to Sport-Ell-Tutti, the office offers courses in Italian sign language, and runs an English class for students with learning disabilities, as foreign language is generally one of the most difficult subjects for such students. The center collaborates with health services in the city on programming as well, and Emilia organizes and speaks on a number of panels related to disability. These panels seem to be popular – there were probably 60 people at the last presentation I attended.

The main component of the center, though, is making sure disabled students have everything in place to succeed at school. When students come into the center for assistance, staff members help them plan for their time at the university. The center acquires any equipment needed, and makes sure accommodations like extended time are honored. If a student has trouble with concentration, for example, a staff member might arrange for them to take the exam in parts. If a student needs an LIS interpreter or must have a recording/note-taking program like Dragon on their computer, the office ensures these needs are met. Additionally, a large tutoring program exists to assist disabled students. The program requires a 20 hour course for all incoming tutors (which I attended), and their time commitment is in the hundreds of hours. The program seems to be quite effective, and there are certainly a number of students who want to be tutors. Le Eli-Che also offers accessible transportation and is constantly working to remove physical barriers in the university.

As far as disability services go Le Eli-Che is generally ahead of the curve. As most Italian universities are public and receive government funding to meet the needs of disabled students, there are disability services offices at other universities, but it seems like the relationships Emilia has built with the Parma community (the health services community in particular) and with the students have left Le Eli-Che better positioned than most.

If it seems like I’m writing an advertisement for Le Eli-Che, it’s only because I am so impressed with (and jealous of) their services, and, even more to the point, with their attitudes towards disability. You would expect everyone working with disabled people to believe in the dignity and autonomy of disabled people, but unfortunately, in my experience, you would be wrong. But not here. When I told Emilia and Massimo about how disabled students have been treated at my school, they were shocked. They couldn’t believe that the administration wouldn’t do anything about professors denying accommodations to a student having panic attacks or wouldn’t help a student being bullied by her suitemate because her suitemate thought she was faking her illness. When I told Massimo that people often blame disabled people when they sue for accessibility, he was speechless. After constantly having to explain to people at home why disability justice matters so much to me, it was wonderful and affirming to spend time with people who were as outraged about the treatment of disabled people as I am.

My one quibble with Le Eli-Che is that the second floor of the office is inaccessible. (It would be a much larger quibble except I get the impression they didn’t have much choice in the space, and even getting an accessible first floor must have been difficult in a city where most buildings have a step up. There is a wheelchair user who works at Le Eli-Che, and she runs her speech therapy sessions on the first floor). This flaw aside, I think Le Eli-Che is a wonderful place, and I feel incredibly lucky to have gotten the chance to intern there.  

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.