State of the Blog

I realized today that it's been over a month since I posted. It's not that posting hasn't been on my mind--it has--but more that I'm not quite sure what direction I want to take this blog in. I also started a new job/internship at the beginning of May that has me commuting down to Stanford--it's a beautiful drive, really, but by the time I get home I just don't want to look at my computer anymore (that's a first for me). Anyway, my apologies, and I'll try to be more regular about posting once I get into a routine at work. (At the moment I'm in Maine with family, so I have a bit of time on my hands).

So what direction DO I want to take this blog in?

That's a great question that I haven't quite figured out. On the one hand, I'm fascinated by the disabled blogosphere and want to add to the dialogue about women and disabilities (particularly embodiment, sexuality and disabilities). On the other hand, I'm reluctant to focus solely on my experience as a disabled woman. This resistance is something I'm trying to explore. Maybe it's shame, or maybe it's that part of me that wants to ignore the disability altogether, that confuses talking about it with complaining, a kind of weakness that I don't want to acknowledge.

I had this reaction recently when reading some other blogs that focused on the disabled experience. I noticed myself getting angry at what I viewed as complaining and whining about something that wasn't going to change (accessibility issues, for example). But shouldn't there be a place for this kind of dialogue? Certainly, I value fighting for what I need and speaking up for myself, but I can't deny that there aren't moments when I just want to bitch and moan. Why am I so averse to this?

While I hate to blame my upbringing, I spent most of my childhood fighting against the notion that I was disabled. I've talked about this before, but in a nutshell, complaining assumed an acceptance of the disabled "identity" (if you can call it that) that made me so uncomfortable. It's easy at 24 to talk about empowerment and disabilities studies and finding my voice, but at 12, I wanted nothing more than to fit in. I spent the majority of grade school and high school being the only student who had a physical disability, so it's no wonder that I wasn't particularly accepting of my own limitations.

But where does that leave me now? To what extent do I still view talking about issues of accessibility and prejudice as a weakness? Creating a blog in which I discussed my disability goes completely against this belief. Even though I acknowledge that my disability and physical limitations profoundly shape my experience, there's still a part of me that wants to sweep it all under the carpet and pretend it never existed. Perhaps that's why I get so angry when I fall (which, let's face it, happens a lot)--falling signifies a lack of control, an acknowledgement of an issue that I am trying my darndest to ignore.

So where am I going with all of this? I don't know. Part of this post is an attempt to acknowledge my resistance to creating this blog, to try and explore why it is that I've taken a month to update. Certainly being busy is part of that, but it's not the whole story. Furthermore I want this blog to be reflective of my experience, which many times has very little to do with disability. Please be patient with me as I explore this terrain.

Note: I am currently on the East Coast for my graduation, I probably will not be able to post in the coming week.

Blogging Against Disabilism

I want to participate in this, I really do, but I've been on the road all day and I fear that constructing coherent sentences might be difficult at this point...so I will be back tomorrow morning all bright eyed for a proper post!

Universities and Accessability pt. 2

Sorry for the hiatus. To be honest, I'm trying to figure out what direction to take this blog in. I'm starting an internship this coming week at a nonprofit startup creating low-cost incubators for resource-poor settings (mainly India and Haiti), so my mind has been elsewhere. More on that in coming posts.

Anyway, I do want to continue the discussion on accessibility and universities.

Growing up in San Francisco, I was only dimly aware of colleges and universities on the East Coast. That said, Berkeley and Stanford were far too close to home for comfort. Because of the surgeries, I had spent a lot of high school physically dependent on my parents for everything from bathing to getting to school, and I was eager to prove to them (and everyone else) that I could survive on my own. Though I visited schools on crutches and learned very quickly that some schools were not very accessible or considerate of those with disabilities, I assumed that such concerns wouldn't be an issue once I entered college a year later. I wasn't aware that the struggles I faced in visiting colleges--from not being able to go on tours to finding most areas of campus downright impossible to access--would be indicative of my experience once I entered college. So with that, a list of things to consider both when visiting and attending colleges/universities.

Visiting Schools: Things to Ask and Consider

Accessibility of a particular campus is usually not something that is discussed in the Fiske Guide or the Princeton Review, so it's often hard to gauge beforehand just how accessible a campus is or who to talk to regarding accommodations.

• Once you have a list of colleges you're interested in, see if they have a committee or individual that deals with accommodations. Usually a search for disabilities on a universities website will yield results, though be aware that different schools have different names for these departments (usually in an attempt to be politically correct) that often make them even harder to locate. For example, Harvard's is called the "Accessible Education Office".
  
• If you're seriously considering a school, call these committees, offices, or individuals and talk to them about how accessible the school is, what kinds of accommodations are available, etc. (a list of considerations and questions to follow). This might sound simplistic, but I came from a teeny (think 250 students) high school, so I was unaware that such offices even existed.
• Before scheduling a visit to a school, ask their admissions department about accessibility of tours and info sessions. Only two of the schools that I visited offered individual wheelchair tours, and I was too slow on crutches to keep up with the group tours. At one school, I was simply handed a map and told to explore the campus on my own.
  
• Tours will give you a very good idea of whether a school will be able to accommodate your needs. If possible, ask for an overnight visit and try to attend classes, as this will give you the best picture of day-to-day life, particularly whether classrooms and dorms are accessible.

Questions to Ask:

• How many dorms are accessible? When I attended Wes, the only accessible dorm was the newly-remodeled freshman dorm. This was great freshman year, but not so helpful when I was a sophomore. There are many unsavory things I would rather do than live with freshman for four years. While many schools have one or two accessible dorms, it is rare that all dorms will be accessible, which can be a concern if there are events held there or you want to meet up with a friend.
  
• where are the dorms located? At Harvard, the majority of accessible dorms are located far from campus, and despite having a shuttle, almost no one wants to come visit "the quad" (located a mile from Harvard Yard). Furthermore, the older houses are so ridiculously inaccessible, that I found it difficult to visit my friends in the houses closer to the main campus. While I understand that it is both expensive and difficult to remodel older buildings, my inability to even visit friends in other dorms/houses was frustrating and limiting.
  
• Where is the laundry? This sounds ridiculous and frivolous, I know, but trust me when I say that trying to drag your laundry two blocks and then down to the basement with a broken hip is a PAIN.
  
• Where is the dining hall and is it accessible? Take into consideration how far you have to go from your classes or dorm to the dining hall and whether that path is accessible (particularly in the winter, a time in which previously accessible areas can turn into impromptu ice skating rinks). Also, get comfortable asking someone to help carry your tray if you need it. Friends are usually good for this, but make sure that the dining hall staff is also comfortable helping out if need be. (This can mean everything from carrying your tray to telling you what food is available and helping you serve yourself).
• Where are the mailboxes? Again, distance and accessibility is important, particularly if you're receiving packages. Ask the mail room staff whether they can deliver to your dorm (this can be difficult depending on the level of security and access in your dorm), or whether a friend can pick up your mail for you (also difficult if ID is required). Consider also whether the mailboxes themselves are easy to open. Twisting dials and locks can be difficult for many people, and some schools are willing to put in key locks or more accessible locks if needed.
• NOTE: If you're not needing a fully wheelchair accessible dorm and are walking (whether with assistance or on your own) some things to consider: Are there bannisters on all stairs? Is physical plant able to put in grab bars or other devices in the bathroom? (at both Harvard and Wesleyan I had them install grab bars in the bath and shower so I could easily get in and out without requiring a wheelchair accessible bathroom). Also consider how long it takes to get these needs met. Physical plants are notoriously busy and overbooked, so sometimes it can take weeks or months to get something installed. See if they can do this work over the summer so everything's ready once school starts)
• How do you get to class or other buildings on campus? Consider the distance to classes and whether there is transportation offered. Many larger schools offer accessible vans or buses to and from different areas of campus, but this is rare in smaller schools (simply because of distance or demand). A "small" campus is relative, particularly in the winter, when walking the block can be challenging. Figure out who can give you a ride--if the school doesn't have a van service, sometimes public safety can offer a ride, though these cars are often not wheelchair accessible.
• are classrooms accessible? Again, this is where you run into the conundrum of old buildings. Usually science centers are fabulously accessible (particularly since they get remodelled frequently) while social science or humanities departments are stuck in old buildings. Usually you can work around this, and a lot of universities are willing to schedule classes in accessible rooms, but sometimes this can have comic results. For instance, they once relocated an English class of 14 to a huge lecture hall in the science center...even i said i didn't mind if they moved it to another building.

Things to know while at school

• Be Proactive: for the most part, it's up to you to contact the accessibility office, get documentation, and ask for what you need. Get to know these people well and really advocate for your needs. Ideally, try and get everything set up before you go back to school so you're not scrambling to figure things out at the last minute. Also know that it is your responsibility to ask for the help that you need, whether it's extra time on exams or the use of a computer. Most profs are extremely accommodating, but it's up to you to ask for their help.
  
• Know who to call for transportation. A lot of schools have a list of students that are able to use the accessible transportation. make sure you are on this list (usually done through the accessibility office). I cannot tell you how frustrating it is to "think" you are on this list, call for help, and be told they cannot help you because you're not on the list.
  
• Know the number for physical plant: Not only do are these people in charge of installing any kind of aides you might need in your dorm, but they're also usually in charge of plowing and salting in the winter. Again, sounds trivial, but you want to know who to call if the path to class has suddenly transformed into an ice rink or if there's a large snowbank blocking the stairs or banister.

Phew. I think that's it. sorry for the length guys.

Annie

image: my own, taken at Wesleyan in Spring 2004.

Universities and Accessability pt. 1

The other day, I came across a document for counselors about advising high school students with disabilities about post-secondary options. The document, which was published by the Health Resource Center at George Washington University, can be found here. While it glosses over a number of issues and isn't particularly thorough, I am particularly interested in advice given for high school students with physical disabilities. This kind of information, or any consideration of accessibility, was just not part of my college counseling experience. Admittedly, had such information been available to me, I'm not sure whether I would have listened. I am stubborn when it comes to accommodations, and would probably viewed such advice as condescending and unnecessary. Six years later, having transferred from one college to another because of inaccessibility, I am no less stubborn, but perhaps a little more realistic.

I grew up in San Francisco, attended private schools, and spent much of my childhood and adolescence proving (much to my parents' chagrin) that I could do everything my friends did. It wasn't so much about "overcoming" the disability (a term I loathe--having been born with CP, I had nothing to overcome) as it was about proving my parents wrong and being the same as my friends. If they played basketball, so did I, etc. etc. Attempts at skiing, rollerblading, soccer, and ice-skating were also made, with little success (I can do an awesome snow plow though). The point being, whatever accommodations my parents tried to make were usually thwarted by a stubborn and determined Annie.

I remember when my orthopedic surgeon first proposed a surgery to correct my gait—he was just as hopeful as I was, and, apparently, just as clueless. The surgery entailed breaking the femur below the hip bone and then rotating my leg outward by seventy degrees so as to correct the “toed-in” appearance of my gait. Not only would I be walking straight, but according to Doctor Gamble, I could play soccer, run without tripping, ride a bike, even ice skate—activities that I had stubbornly tried but failed to master. It wasn’t until a year later, when, four weeks post-surgery, I was still dependent on Valium to stop the full body spasms, (the logical result of turning anything seventy degrees,) that I realized that neither of us had anticipated that it might not work. Yes, my legs appear straighter, but six years later, I still have muscle spasms, reduced balance, and bone pain. As good as my legs may look, to me having a surgery simply to straighten the appearance of my legs sounded eerily like cosmetic surgery. Indeed, Rosemarie Garland-Thomson makes this connection, referring to reconstructive surgery as “cosmetic surgery’s twin:”

Cosmetic surgery’s twin, reconstructive surgery, eliminates disability and enforces the ideals of what be thought of as the normalcy system. …The conception of what Susan Bordo terms ‘cultural plastic’ through surgical and medical interventions increasingly pressures people with disabilities or appearance impairments to become what Michel Foucault calls “docile bodies” (2002, 10).

Prior to this realization, I had known my body as something always on the way to something else—a physical state that was, at least in my opinion, impermanent. I remember waking up from my second surgery—my throat was raw from the breathing tube. My right leg felt like a lead weight, and even though I had gone through this surgery only six months before, I had forgotten the shock, pain, and disorientation that would bombard me upon waking. And there, at the end of the bed, was Doctor Gamble:

“It came out beautifully. Seventy degrees of rotation. It’s really too bad that we couldn’t get the same results on the left leg. Perhaps we could do something with the ankle”

Though it would take another two years, one unfortunate dive down the stairs (that required an ambulance ride to the emergency room and surgery to set my collarbone) and a broken hip before I was ready to make peace with my body, I view that statement as the breaking point. The body I had known for 18 years was gone, and suddenly I was left to negotiate a body that, despite my most stubborn attempts, required accommodation.

All of this is a rather long and circuitous route to talking about universities and accommodations, but the point being, I applied to and enrolled at university without ever really acknowledging whether or not they could accommodate my changing needs. Some of this had to do with growing up in California and having very limited experience with snow and ice, but most of it had to do with just not knowing what my body could and could not do. I wrongly assumed that the pain, the balance, and the falling would get better as I recovered from the surgeries.

Aside from a dance therapy class that I took when I was little, I had grown up with little contact with other disabled children—indeed, throughout grade school and high school, I was—to use Harriet McBride Johnson’s term—the “token cripple.” I didn't even know that schools had offices that dealt with accommodations, so I didn't know to ask. I didn't know who to talk to when stairs didn't have banisters, when I was placed in a dorm three blocks away from the laundry, when ice covered sidewalks made it impossible to get to class. At Wesleyan—where I spent my first two years of college—I was one of five, maybe ten, physically disabled students. All of us were relatively mobile, and for some reason, no one thought to ask where the “other” disabled students were. After I broke by hip in the fall of 2004 and became wheelchair-bound, I was told by the dean that it would be best if I was kept out of school until I was out of the wheelchair. Though I went back to Wesleyan with the help of my father, I began looking at other schools.

While I am forever thankful for the time I spent at Wesleyan--it was and is an amazing school--I wish I had been more aware of and more vocal about my needs. (At this time, the aforementioned dean has stepped down, and they are now considerably more accessible, so it is not my intention to single out Wesleyan at all). However, I do want to address the issue of accessibility at Universities, particularly when one is not used to asking for or needing accommodations. Since this post is rapidly becoming way too long (and I really want to enjoy the 80+ degree day we're having her in SF), I will be posting again later tonight about things to consider when looking at colleges and universities.

Johnson, H. M. (2003). Unspeakable conversations. New York Times Magazine, February 16, 2003, 50.

Thomson, R. G. (2002a). Integrating disability, transforming feminist theory. NWSA Journal, 14(3), 1-32.

Introduction and the Politics of Staring

The other day, I visited a friend who was recently in a very serious hit-and-run accident. As a result of the accident--in which she was thrown and landed on her head--she is now missing a portion of her skull (which they are waiting to replace once the swelling in her brain reduces) and is required to wear a helmet and use a cane. Thankfully, she has no known long-term damage, which is remarkable considering the severity of her injury. Since it was a beautiful day, we decided to go for a walk around Sonoma and grab some lunch. Sonoma--for those of you who aren't familiar with it--is an old farming town that is now smack in the middle of the wine country and is, as a result, teeming with tourists and filled with overpriced boutiques and wonderful restaurants. Given this relatively tame atmosphere, I hadn't considered that her helmet and cane, and my disability would be an issue.

I have mild cerebral palsy, and though I usually walk without aid, my balance is terrible (hence the name of this blog) and I have a very distinctive gait. I don't remember when I first noticed people staring, but it has knit itself into my awareness...there, but not always on the surface. As a result, the stares, the comments, and the whispers have always affected me less than my parents. They would get angry, and I would try desperately to prove to them that I was okay, that it didn't "bother me". Not that I don't get angry--I do--but I just don't have the energy (or the strength, really) to react or "respond" (in the sense that one can) to every single stare. And honestly, some--like little kids--I don't mind. They're little kids and they're curious...and they're usually uninhibited enough to come up to me and ask what's wrong with my legs. But amidst my parents' and friends' anger and outrage, I usually remain silent. I pretend I don't mind, because in recognizing that anger and hurt in myself, I also have to come to grips with my own shame and discomfort about my body...about what it means to be the "object of the stare."

My friend had mentioned "joking" comments she had received--usually from men, and usually about the helmet she's required to wear when standing--and I was shocked. Perhaps I'm lucky in that I can only recount a dozen or so times that a stranger has made audible comments to me about the way that I walk. Those dozen or so times were certainly memorable, but usually I can walk down the street without incident. That was, until we walked to the Sonoma square. Maybe it was because my friend had brought attention to it, or maybe it was because I was hyper-aware and protective, but eyes followed us everywhere. The woman at the table next to us at lunch went so far as to turn around and stare at us for a good ten minutes while her dining companions used the restroom. I'm not usually brazen, and most of my witty comebacks are only thought up after the fact, but I was stifling rage. I kept coming back to a quote I remember from Rosemarie Garland Thompson's Extraordinary Bodies, my first real introduction to disability studies:

“If the male gaze makes the normative female a sexual spectacle, then the stare sculpts the disabled subject into a grotesque spectacle. The stare is the gaze intensified, framing her body as an icon of deviance…And as every person with a visible disability knows intimately, managing, deflecting, resisting, or renouncing that stare is part of the daily business of life” (2001, 6).

At 24, I am only gradually coming to terms with my disability, with accepting my body as it is and not continually and stubbornly fighting against it. This experience was most certainly part of that journey. I realized, in being the object of those stares, a little bit of what my parents must feel. At the same time that I was angry and hurt, I wanted to protect my friend...this was not a spectacle...this was a woman who had fought for her life only a few months earlier. The fact that she only had a helmet and a cane to show for it, was, frankly, a miracle. I was used to this, I could handle it, or so I thought. Those stares, the whispers, and the discomfort pierced my armor more than any other experience in recent memory, and I'm still not quite sure how to respond.

I struggle to understand how an otherwise seemingly well-adjusted adult can stare so openly at someone. How anyone can think joking (or downright insulting) comments about another individual's body are okay. I pretend that I don't notice or that I'm not listening. I am. I wish I had the courage to stare back or respond. I'm getting there.


A Disclaimer: this is my first blog and I am, to put it mildly, relatively unskilled when it comes to the internet. Case in point: I just discovered RSS Feeds a few weeks ago, and am now subscribed to dozens of blogs that I'm trying desperately to follow. According to Google Reader, I have 74 unread posts. Whoops. Bare with me as I try to navigate the maze.