Six Years

Six years ago today I skipped field hockey practice to go home and crawl into bed and I didn't crawl back out for another few years, give or take. Today is my sickiversary, a day to celebrate if for no other reason than what else am I going to do? Living with a chronic illness is not always the easiest thing - and honestly it's often a lot more difficult than I think most people realize - but I'm here, and I'm happy to be here. I'm not really sure what 14-almost-15 year old Maddy would think of 20-almost-21 year old Maddy. She'd probably be dismayed that I'm still sick, sick forever in fact (that's what chronic means). But on this side of things, I'm feeling pretty good. I spent most of high school in a fog of denial, felt like a burden, was ashamed for something that wasn't my fault. And then I was angry for a while at all the people who made me feel that way, and angry at myself for not seeing through them. And now I'm, I dunno, ok? To be sure, there's still anger, but I'm trying to channel it constructively and meet people where they're at. It's been pretty wonderful to be in spaces where I'm supported - many thanks to family, friends, folks I met this summer, and my school community. I'm sure some people think I'm too intense, but I'm just a loud silly weirdo who really believes in disability justice. Happy sickiversary to me!

What Are The Odds: Chronic Illness and Privilege

It took me a year to get diagnosed. It didn't happen all at once; we gathered clues from different doctors, input from different tests (most of which concluded there was nothing wrong with me at all). I saw so many doctors I lost count. They all blur together, all those hours in the car, all that time in the waiting rooms. When I wasn't in a doctor's office I was in bed. And in bed I stayed, even after someone finally said, "I think you have Dysautonomia."

I was put on medication after medication, trying to find a combination that would work. But it was hard to tell sometimes what was an effect of the meds and what was the weather or the food I'd eaten or the random quirks of my body (and there were many quirks). My parents took time off work, rearranged their schedules so I wouldn't be home alone. They asked me to see a therapist and I acquiesced. I didn't think I needed therapy, but they were so worried and it didn't really bother me so I went. In retrospect, I definitely needed therapy.

Even when it wasn't clear that I would graduate from high school on time my parents were talking about college. My favorite doctor told me that a temperate climate would be best, so we looked across the country at schools in California. I wanted to go to college, mostly because I didn't want to get left behind. And I was already being left behind. I was lucky: my friends stuck around, didn't abandon me like many people's do when they get sick. But I still spent most of my days alone, going online and seeing all the fun that was being had without me.

My parents were overprotective. How could they not be, they were terrified. But I still felt trapped. I felt like a ghost, just floating along, not really doing or saying or thinking anything of substance. My brain was in a fog - a symptom of the illness - and the fatigue weighed heavily. It was all I could do to stay awake.

For three years in high school I lived like this - doctors appointments and aimless scrolling through the internet. Occasional physical therapy, occasional school. And over and over and over.

And yet, I was lucky. My parents, though they were scared, sent me to school 3,000 miles away. The climate and the short walks and the forced independence helped, and my stamina began to return. I built up my strength, nowhere near its former levels but enough to allow me to function as a full time student. I still battle brain fog and cancel plans due to fatigue and spend not insignificant amounts of time in pain, but I am ok.

When I think of all the reasons I am here, I think it is no accident that I come from an upper middle class white family. Actually, I know it is no accident. It's simple, really. My parents have health insurance. They had jobs that allowed them to take me to all of those appointments, and they possessed the cultural capital to stand up to the doctors and school administrators who told me to my face that I was lying. If they were working low wage jobs, if they didn't have a car (two cars, actually), if they didn't speak English, forget it. I would never have gotten a diagnosis, let alone graduated from high school or continued on to college. I would still be at home, lying on the couch, miserable from the pain, dizzy from the fatigue, wanting to melt away and have it all cease.

My parents, for the record, are superheroes. They moved mountains for me. There are privileged young folks with chronic illnesses whose parents accuse them of faking, who refuse to take their children to the doctor, and I was very lucky to get the parents I have. But I know there are parents out there who care just as much for their children, who want to fight for their children, for their health, for their happiness, for their right to an education, but who are limited in what they can do because they do not have the resources.

And the thing is, Dysautonomia, my chronic illness, is not rare. It really isn't. It's just rarely diagnosed. A number of doctors have told me that their patients are overwhelmingly upper middle class white girls. Some of them seem to think that this population is the only one affected by Dysautonomia. I don't have a medical degree, but I think that they're wrong.

It took me a year to get diagnosed, and I had nearly everything else going for me. And now, I'm ok. But there are people out there who are sick just like I am and they're living vastly different lives, and it has absolutely everything to do with privilege.

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.

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. 

Blame It On The Body: The Historic and Modern Day Oppression of Disabled People

This is a review essay I wrote last semester for my American Studies seminar.

Haller, Beth A. Representing Disability in an Ableist World: Essays on Mass Media. Louisville, KY: Advocado, 2010. Print.

Johnson, Mary. Make Them Go Away: Clint Eastwood, Christopher Reeve and the Case Against Disability Rights. Louisville: Advocado, 2003. Print.

Nielsen, Kim E. A Disability History of the United States. Boston: Beacon, 2012. Print.           

Relatively speaking, the field of disability studies is quite new.  This is perhaps why the authors of the above books explain how they came to disability studies, as if this path is rare enough to warrant an explanation.  Their accounts, Haller’s and Nielsen’s in particular, express a late developing and almost accidental interest in disability studies.  While there is on average a book a day published on the Civil War, the entire field of disability studies only produces a handful of books per year.  This is all to say that at some point, when far more disability studies books are published, the above three might not be tied together in a review essay because their publication dates and subject matter reflect quite a range.  For now, however, the overarching topic of disability is enough.  In fact, for someone new to the field, the range is beneficial.  Broadly speaking, Nielsen’s Disability History of the United States sets the stage, giving context for all that follows, and emphasizing the idea that while the academic discipline may be new, disability issues are not.  Nielsen ends with the passing of the Americans with Disabilities Act, which is where Johnson begins, crushing Nielsen’s optimistic ending with stories of discouraging and infuriating legal, political, and attitudinal reactions to the law.  Haller’s timeframe overlaps with Nielsen, but her focus is on representation and her writing more scholarly.  Johnson’s book is the strongest of the three, though Haller’s and Nielsen’s are largely excellent as well.  All three firmly endorse the social model of disability, that is, the idea that the suffering disabled people endure is a result of an oppressive society and not inherently because of a disability itself.  Together, these books paint a fascinating, if frustrating, picture of how society has come to approach disability.

            Though the subject matter A Disability History of The United States is chronologically the first of these books, it is the most recent (published only two months ago).  Perhaps that is why this book, far more than the other two, has a constant focus on how disability intersects with race, class, sexual orientation, and gender.  Nielsen argues that “the concept of disability is at the core of American citizenship, contested explorations of rights, racial and gender hierarchies, concepts of sexual deviance, economic inequalities, and the process of industrialization,” and contends that a story of US history that ignores disability is incomplete (182). Using historical documents and reinterpreting well-known narratives in a disability context, Nielsen claims that “the power to define bodies as disabled has given justification, throughout US history, for subjugation and oppression” (182).  Essentially, assigning morality to bodies has been and continues to be at the root of injustice.

One of the starkest examples Nielsen gives of ableism intertwining with other forms of oppression is slavery.  “The racist ideology of slavery held that Africans brought to North America were by definition disabled,” Nielsen writes, continuing, “Slaveholders and apologists for slavery used Africans’ supposed inherent mental and physical inferiority, their supposed abnormal and abhorrent bodies, to legitimize slavery” (42).  Picking up on this thread later, Nielsen notes the number of insanity diagnosis among former slaves.  She quotes Civil War era physician Peter Bryce, who argued that freedom for former slaves removed “the restraining influences which had been such conservators of healthfulness for mind and body” (91).  Doctors like Bryce, whose authority positions and prejudices combine to actively harm those considered disabled, appear repeatedly throughout the book.  Despite these reoccurring circumstances, Nielsen’s general narrative is one of progression, and justifiably so – circumstances for disabled people have improved on the whole.  Yet, in a present when mental health diagnoses are much higher among people of color and doctors are still the gatekeepers of diagnostic validation, she could have stood to make connections to current circumstances more explicit.

Enter Mary Johnson.  One need only read the first page of Make Them Go Away to understand that the disability rights struggle is far from over.  The two authors’ different approaches come into focus here: while Nielsen is surveying 200-plus years of history, Johnson is focused on one decade.  Nielsen devotes a few paragraphs to the ADA and its aftermath (including the mention of an amendments bill that was passed in 2008, five years after Johnson’s book was released), while Johnson writes a whole book.  In the broader context of American history, the ADA is a tremendous achievement, but Johnson does the important work of scrutinizing that achievement and its implications.  Her book contains two main sections: The Case Against Disability Rights and The Case For Disability Rights (a third section, Continuation, examines where disability justice stood at the time of writing).  Johnson, in examining reactions to the Americans with Disabilities Act in the decade following its passage, argues that the widespread refusal to see disability through the framework of rights has been the cause of overwhelming discrimination against disabled people. 

Johnson begins by explaining the context in which the ADA was passed.  Unlike other landmark civil rights legislation, she notes, there was not much of a public discussion around disabled people and disability (XII).  Therefore, although a law was passed guaranteeing protection against discrimination on the basis of disability, the majority of people still felt that “disabled people faced essentially private, medical problems rather than problems of discrimination” (XIII).  Significantly, liberals, prone to fighting for civil rights, agreed with the majority view that “rights was simply the wrong lens through which to view the disability situation” (XIII).  Johnson, a renowned journalist in disability circles for founding and editing The Disability Rag and Ragged Edge, drives this point home in part by repeatedly quoting the New York Times’s ableistic news coverage and Op-Ed page.  She describes some of the legal implications of the ADA, noting that without an enforcement agency, the law requires lawsuits to bring non-compliant businesses up to ADA standards, which puts disabled people in the position of constantly having to choose whether to just not enter certain spaces or to sue and be labeled a whining cripple.

In the first section of the book, Johnson lays out the case against disability rights in the 1990s, which manifested in fights against the ADA and was spearheaded by right-wing think tanks.  Her strategy is effective: she establishes patterns in the disability rights opponents’ arguments and then repeatedly quotes think tank papers and newspaper columns that use these frameworks.  The common arguments include “We’ll give them their special toilet, bus, courtroom, housing complex – just don’t expect us to change the real world for them” and “They are hurting us,” an argument premised on the false notion that there is a strict line between able-bodied and disabled and the mistaken belief that disabled people are a small group (31-3).  Johnson also notes that cost is a constant issue for those against disability rights.  “Nobody seems ashamed to say full access is going too far—like the might if the issue were race or gender—because with access, money has to be expended,” she writes, continuing, “The complaint about cost is not about cost as much as it is about the fact that the cost is being expended for them, a tiny group of complainers” (35).  Her final, and perhaps most powerful observation is the constant qualifying statement made by ableists: “No one is against the handicapped.”  She writes,

“No one is against the handicapped” is why disability rights has had so little hearing in this country.  The phrase says there is no animus against disabled people – even though they are segregated and kept from full access to society, even though the special programs society affords them makes for a much more circumscribed life – far more circumscribed than what any nondisabled citizen would settle for.  The purpose of the phrase is to stifle dissent, although it is doubtful those who use the phrase so unthinkingly are fully aware of what they are doing (44).

Throughout the book, this rule proves true, as Johnson quotes endless op-ed pieces that begin with some variation on “No one is against the handicapped” and then proceed to propose the decimation of disability rights. 

            As Johnson attests, these strategies were highly successful, in part because there were very few people arguing back.  “It is true that the organized disability rights movement ignored the media,” she writes, “Its leaders felt they had good reason.  Most stories about disability were inspirational features about disabled people who had overcome personal affliction with a smile and a bundle of courage,” an image that perpetuated a harmful idea of what it was like to be disabled (XII).  Though further investigations into this topic are out of Johnson’s scope of inquiry, they are right in the middle of Beth A. Haller’s focus.  A Professor at Towson University, Haller’s Representing Disability in an Ableist World investigates both the problematic portrayals of disability in the mainstream media and the recent trend in online disability activism that is beginning to make slight headway in combating it.  Haller argues that the media discourses surrounding disability both prove and perpetuate the widespread and often unquestioned presence of ableism in society.  In an especially relevant quote, Bad Cripple blogger William Peace explains, “My experience with mainstream media has been overwhelmingly negative.  The message the mainstream media wants to present is you’re either a hero or a lazy shit and there is no in between” (3).  As Haller demonstrates, this dichotomy of inspirational and evil is inescapable in modern media.

Haller’s approach is straightforward and effective: a series of essays that use case studies to analyze the representations of disabled people in different media genres.  Haller lays out her methodology in the second essay, titled “Researching Media Images of Disability,” where she describes her work as “content analysis.”  The essays themselves are arranged in a curious order – she starts optimistically and then backtracks to spend most of the book talking about the terrible media representations of disabled people.  Despite this, the essays are quite interesting.  Unlike Johnson, who has a distracting penchant for repeating anecdotes, Haller writes essays that are mostly standalone.  Though she does far more quantitative analysis than Johnson, they share the framing device of laying out common narratives surrounding disability and then supporting their claims with news stories.

Haller’s essay on The New York Times coverage of assisted suicide is a particularly interesting piece, both on its own and when considered along Johnson’s and Nielsen’s books.  Examining Times articles on assisted suicide in the 1990s and 00s, Haller notes several troubling trends, chief among them “a particularly heinous narrative frame presents disabled people as ‘better off dead’ because of their perceived inferiority to able-bodied people” (67).  Diane Coleman, the leader of activist group Not Dead Yet, is quoted as saying that “[A]s a policy, it [assisted suicide] singles out ill and disabled people as fitting subjects for dying.  Meanwhile, neither the public nor health professionals endorse this so-called ‘autonomous’ decision for young, healthy Americans” (69).  Haller notes that those who choose assisted suicide are quoted in news articles, while the perspectives of disability rights groups such as Not Dead Yet are rarely included, an observation that corresponds with Johnson’s analysis of the one-sided nature of disability articles (though Haller chalks this up to a failure of the media to reach out to disability organizations, rather than, as Johnson claims, disability rights groups avoiding the media because of a history of damaging representations).  Haller further argues that people who claim to want to die are often pressured into such decisions, and references a theory of Johnson’s that disabled people who chose assisted suicide are often victims of internalized prejudice.  While Haller’s tone is more scholarly that Johnson’s, their conclusions about the media’s approach to disability issues are quite similar.  Neilsen’s book, meanwhile, covers what Haller argues is the pre-cursor to assisted suicide: eugenics.  “We see evidence of this narrative frame [of ‘better off dead’] in historical coverage of the forerunners of assisted suicide: eugenics and euthanasia,” Haller writes (69), as Neilsen explains, “In law, in popular culture, in science, and even at local county fairs, eugenics was pervasive in the United States in the late nineteenth and early twentieth centuries” (101).  She quotes prominent doctors and judges who pushed for sterilization as a way to guarantee “the destiny of the American nation,” and rid the United States of an economic burden (102).  These ideas come back in Haller’s essay, when she mentions scholar Wesley Smith’s fear that “in an economics-driven medical climate, the message may be that [disabled people] are too ‘costly’ too keep alive” (70).

Finally, all three authors are interested in how language and attempts to define disability have evolved.  Neilsen begins her book with describing Indigenous attitudes toward disability, which she then contrasts with the viewpoints of the European settlers.  She writes that in many Indigenous communities, “though individuals might experience impairment, disability would come only if or when a person was removed from or unable to participate in community reciprocity… a young man with a cognitive impairment might be an excellent water carrier… His limitations shaped his contributions, but that was true of everyone else in the community as well” (3).  The Europeans, however, perceived disability quite differently.  “Within the early capitalist systems beginning to dominate Europe,” Nielsen writes, “the primary definition of disability was an inability to perform labor” (20).  Capitalism, with its emphasis on a normalized body, proved disastrous for disabled people, both by devaluing their contributions and by creating strict divisions between disabled and able-bodied people through a need to categorize people.  Today, Haller and Johnson assert, disability has become medicalized.  “Disability is seen as a physical problem alone, residing with individuals,” Haller writes, citing disability studies scholar Richard Scotch (68).  Johnson argues that such a definition takes the impetuous for the betterment of the lives of disabled people away from society and places the responsibility on disabled people’s shoulders, thus creating space for the rhetoric of self-victimization and laziness that surround the lives of those with disabilities.  Johnson notes that one of the failures of ADA implementation was that courtroom arguments mainly centered around whether a person qualified as disabled, which went directly against the original spirit of the law.  But, as Make Them Go Away’s epigraph reads, “A law cannot guarantee what a culture will not give.”

By and large, these books are not optimistic.  Unfortunately, though disability rights groups have accomplished victories over the years, disability is still stigmatized and widely misunderstood.  One need only look to earlier this week, when the Senate failed to ratify the Convention on the Rights of Persons with Disabilities, a largely symbolic UN treaty, to see that the movement has a ways to go.  (News coverage, it should be noted, followed the patterns laid out by Johnson and Haller – next to none before it was struck down, and the articles written in the aftermath focused on the extreme nature of right wing Republicans and not on big picture disability conversations.  Senators who advocated for the treaty were quoted in their disappointment; disability rights organizations were not.)  And yet, Beth Haller’s observations about the power of the internet as a place for disability advocacy are even more true today than they were two years ago when her book was published.  Disability studies programs continue to spring up across the country.  The anger in Johnson’s book, the claiming of US history as disability history in Nielsen’s, and the measured but absolute take-down of media portrayals of disability in Haller’s indicate that there is energy and confidence in the fight for disability rights.  The advocacy and the scholarship are intertwined at the moment.  Presumably, and hopefully, they will continue to feed each other.