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.