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.

So you've just been diagnosed with Dysautonomia...

One of the things that's difficult about getting a Dysautonomia diagnosis is the lack of information available. After being sick for a few years, I realized that I went a really long time without knowing some pretty basic things. Dysautonomia resources are scattered and can be difficult to find, and while I'm not sure how much a random blog post is going to help, I thought I'd share what I've learned in the 5+ years I've been sick.

Everyone has different experiences with Dys and the following advice is based on mine (please don’t hesitate to add to, question, or contradict any of this in the comments!), but I hope this is useful for some people.  Without further ado, some Dysautonomia advice for the newly diagnosed:

1) Educate yourself about Dysautonomia, POTS, and/or whatever else you’ve been diagnosed with.  You don’t have to know the intricate details of how your body is functioning, but people are going to ask you about it, so it’s good to know the basics.  (I usually tell people that Dysautonomia is a malfunction of the autonomic nervous system, which controls involuntary functions.  They don’t know what that means, but it sounds like I do.)  Additionally, know the names of the meds you’re on and the dosages.  If this is an impossible task (I have been known to write messily on forms to cover up such forgetfulness), have it written down somewhere and bring the list when you see a doctor.

2) If you’re in school, get yourself some accommodations.  If you’re K-12, this will be a 504 plan.  Depending on your symptoms, you might need to arrange for home-hospital (if your school system does this).  There are a whole host of accommodations that Dys kids require, but here are some of the more common ones: extended time, flexibility with deadlines, ability to eat/drink in class, permission to take breaks as needed.

3) Carry a water bottle everywhere.  Do you have a reusable water bottle?  Fantastic, meet your new best friend.  For taking meds and keeping yourself hydrated, you never want to be without a water bottle.  I have various sizes to fit in various bags (and various bags to accommodate the size of water bottle I want to bring.  It’s a whole system.)

4) Get compression stockings.  Yeah, they’re a pain in the ass to put on, but they help with blood pooling and will make you more energetic/less prone to passing out.  You can usually get prescriptions for medical stockings, like Jobst, which insurance will cover.  I also like Spanx for shorts wearing/warmer weather.  Make sure to get some that cover your stomach, which is prime territory for blood pooling.

5) See a physical therapist who knows how to help Dys patients.  In addition to the deconditioning that you want to counteract, your nerves are likely all kinds of tight and doing PT will help loosen them up.  Granted, not everyone has the stamina for this.  If that’s the case, doing even just the tiniest bit of exercise will still help.  Walk around your house a few times a day or to the end of the block and back, if you can.

6) Sleep!  Also known as don’t stay up late on the internet every night.  It’s super tempting to do so, especially when you can sleep in the next day, but having some semblance of a normal sleep schedule will help you feel better.  If you sleep in late every day, you won’t get meds/food/water into your system until later, which will generally make your day shittier.  If getting up by 9 or 10 isn’t an option, wake up around then, eat a few crackers, take your meds, and go back to sleep.

7) Attend to your emotional health.  Being sick can be incredibly lonely, and sometimes it feels like they’re nothing you can do to fix that.  But there are small steps you can take to boost your happiness, whether it be rewatching your favorite TV show or creating the perfect driving-to-doctor’s-appointments playlist or devising semi-elaborate pranks to pull on your family members.  During bad stretches in high school, I would try to do little things that felt productive, like writing letters or knitting a scarf.  Even on the worst days, I always open my blinds because natural light really does make a difference.  As for friends, some will split at the first sign of trouble, but others will stick around.  Ideally, they will reach out to you, but good intentioned healthy people don’t always know what they should be doing, so you may need to ask them to hang out.  And finally, depression is a real factor here for a number of people, sometimes as a side effect of meds, sometimes as a result of isolation, and sometimes as a pre-existing condition that is exacerbated by the loneliness of Dys.  Don’t be afraid to reach out if you need help.

8) Pay attention to what you eat, and how your body responds.  Some Dys kids develop allergies along with their other symptoms.  I'm gluten and dairy free, myself.  It’s incredibly annoying to close-read every label, but I have more energy now that I’ve cut those foods out of my diet.

9) WRITE EVERYTHING DOWN.  This is basically me yelling at myself here, because I’m so bad at doing this.  But seriously.  Take your BP and pulse every day, and write them down.  At the end of each day on a new medication, record how you’re feeling.  If you’re having trouble sleeping, keep a sleep journal.  Your doctor will ask you how often you get headaches/stay up past two/what your BP was last Sunday and you think you’ll remember but you (or at least I) never, ever do.  The more carefully you keep a record of how you’re feeling/what your body is doing, the better your doctors will be able to help you.

That’s it!  I’m sure I’m forgetting things (let’s have a round of applause for brain fog, shall we?), but these are some basics.  I know lots of people have been dealing with Dys for a while and know all of this, but new people are diagnosed every day, so I hope this is helpful for someone out there!

Why I Hate Person-First Language

There are a lot of people, usually able-bodied, who use person-first language (i.e. "person with a disability" instead of "disabled person") because they think it's progressive. It seems especially common with parents of disabled children, occupational therapists, and others who interact regularly with disabled people but are not disabled themselves. It's unfortunate, because person-first language is actually incredibly ableist.

Person-first language perpetuates the idea that disability is bad, by suggesting that disability can and must be separated from someone’s humanity. Disability doesn't work like that, though. When I say I’m disabled, I’m saying that my disability is part of who I am. It’s part of my identity. Calling someone a disabled person isn’t saying that their only identifying factor is that they’re disabled, any more than describing someone as a woman or as queer would indicate that those identities encompassed their whole self. 

Disabled people are always warned not to “become” our disabilities, but it’s really a warning against embracing that part of our identity. What they’re actually saying is that they don’t understand how disability could be positive. They’re saying that disability is bad, that it’s not really part of who we are, that it’s a separate entity keeping us from our real selves. And that is not true.

I know there are some disabled people out there who prefer person-first language, and I will of course respect what people want to be called, but before able-bodied people go around patting themselves on the back for using person-first language, they should consider what their words imply.   

Traveling

I've been in New York this week, first staying with a friend from home in her itty bitty Bushwick apartment and now visiting a friend from school at his house in Park Slope.  I've had a decent amount of energy, but the thing about traveling, especially in a group, is that everyone wants to do everything all the time.  There are five of us staying at Arthur's place, and while they are wonderful friends who are very understanding about my illness, it's still difficult to constantly have to be the one to ask if we can sit down for a bit or grab some food because I'm feeling lightheaded.  Spending all day running around the city has also underscored the problems with being far from a bed/couch/other space to lie down.  I nodded off in a bookstore chair the other day, but with orthostatic intolerance, the quality of rest is tremendously better lying down than sitting up.

It's also been a little stressful dealing with symptoms at Arthur's house.  At home, in my dorm room, or at the house of a good friend or relative, people know the deal.  They understand why I need to rest, and I don't feel awkward taking a nap on the couch or taking a break to lie down.  I only met Arthur's mom a few days ago, though, and I hadn't gotten a chance to explain the whole chronic illness thing before I found myself wiped out and needing to spend the day in bed yesterday.  I was actually able to talk to her about my Dysautonomia last night, but that was after I had been resting all day.

I go back and forth on the judgement thing. On the one hand, if I don't jump to give up my seat on the bus and get dirty looks, I've gotten to the point where I am prepared to accept people's ignorance without launching into an explanation.  But when it's a friend of a friend, or a parent of a friend, or a classmate, or someone else I might see again, I feel an overwhelming need to make sure they don't think I'm lazy or selfish.  If it's a situation like the one yesterday, I feel pressure to act better than I feel.  Even if I had been feeling terribly last night I wouldn't have asked to eat in bed, because that would have been too awkward.

The other worry this trip has caused is that traveling in Europe will be incredibly stressful.  I'm studying abroad in Italy next semester, and I've been looking forward to taking weekend trips, but my experience this week is making me anxious.  Traveling without a plan seems like the thing to do for young college students, but is that going to leave me exhausted in the middle of a city where I don't speak the language?  What if my travel companions (who I'm assuming will be people on my program, none of whom I know well now) want to do more than I am able?  Will I hold them back?  Will they pull me along when I'm feeling miserable?  I am choosing to remain optimistic, but there are concerns.  There is one thing I can bring to the table as a travel buddy, though: I will make sure we never skip a meal, because if we did I would basically collapse into a puddle of goo. 

Hello out there

The thing is, I've been thinking and talking about disability for a while now, and I don't have a singular place to keep these thoughts in order.  So, hello.  Welcome to that place.  I'm Maddy, I'm 20, I'm from the DC area and attend college outside of LA, and I have a chronic illness called Dysautonomia.  I came to the online disability community through tumblr, but I don't want to use that as a public blog because people who are interested in disability and/or Dysautonomia may not also want to know how much I appreciate the Bel/Freddie relationship on The Hour or share my significant enjoyment of hedgehogs.  I also help run the Young People with Dysautonomia tumblr, but that is not a personal space.  I have a twitter, but I've been jonesing to do some actual writing lately, so that is no longer sufficient.  Thus, this blog.

I've been sick for over five years now, since the beginning of my sophomore year of high school.  I didn't really go to high school after I got sick, taking classes at home for the most part and spending most of my days in the basement watching tv.  I started college part time, eventually going to full time as my health improved.  I've certainly gotten a lot better over the past five years, but Dysautonomia and its accompanying gifts (fatigue, brain fog, orthostatic intolerance, etc.) are still a very big part of my life.  I started a student organization called the Disability, Illness, and Difference Alliance (DIDA) last spring with some friends, and have spearheaded that effort ever since, facilitating discussions, meeting with administrators, and generally doing whatever I can to make disabled students and our concerns more visible on campus.  I also did an independent study in Disability Studies last semester, which was an incredible experience that only increased my desire to fight for disability justice.  Disability advocacy is looking more and more like what I want to do as a career, which is an exciting prospect.  I feel so much better about myself and my circumstances since I started learning about disability in a social, rather than purely medical, context, and I want to both extend that empowering feeling to others with disabilities and raise awareness in the general population.

I'm not quite sure what this blog is going to look like yet.  Right now I'm imagining a smorgasbord of my personal experiences with illness, thoughts about disability issues generally, and maybe some chronic illness advice.  Having begun to study the systems of oppression behind disability, I'm not really a "doctors always know what's best for you" or a "just talk to your professors, and everything will be ok in class" type of a person, but I'm committed to finding a balance between healthy anger at the way disabled people are treated and overall happiness in my life.  I guess we'll see how it goes!