Tuesday, November 23, 2004


My mom told me once that when I deny people the opportunity to help me, I deny them the chance to be a blessing. I found her words absurd – absurd and inconceivable. I relied on people far too often. I ask my roommates to clean the floors and carry my laundry from the drier to my room, I solicit strangers outside of shoe stores to walk me to my car or women in parking lots to cover me with umbrellas while I assemble my wheelchair in the rain. I’ve always imagined that if I find myself annoying, others would feel the same way.

It was late spring of my third year at Morrell Park Elementary/Middle School, and my students were convinced it was already summer. There were four days of school remaining (not that I was counting), and rather than spend the last hour of the school day listening to my own voice while thirty sixth graders attempted to secretly pass notes and play cards under their desks, I made an impromptu decision to save my own sanity: I took my kids outside.

For the last hour of the school day, I sat on the playground in a chair that one of my students had stolen from the second grade classroom and watched a few of my boys violently hurl a four square ball back and forth. My girls were clustered around my feet talking while other students ran mindlessly in circles. I participated in conversation with the girls while silently praying that none of my kids would climb the chain link fence, inflict pain upon themselves or others, or disturb the high stakes learning that was surely taking place within the nearby portable classrooms. Meanwhile, I got hot.

Since I was sitting, my body temperature didn’t matter much. I didn’t plan on going anywhere until 2:30. That left me 45 minutes to either spontaneously cool down or come up with an ingenious way to get myself from the playground, up the stairs and back to my classroom in time for dismissal. I pushed these thoughts to the back of my head and listened to Peggy and Kari discuss their summer plans. I watched Andrew bounce the four square ball directly into Michael’s face, and I glanced in the general direction of Jessica as she paced back and forth along the edge of the blacktop engrossed in conversation with what appeared to be a twig. All the while, my nerves were getting hotter and hotter and I felt my face flush from the heat. At one point I actually felt my entire nervous system come to a halt on account of the heat. By the time 2:30 rolled around I couldn’t get out of the chair. I felt like three mysterious hippos had descended upon my shoulders.

I didn’t have a whistle to use to get my classes’ attention (and, even if I had, they likely would have ignored it), so I yelled. Approximately 27 of my thirty students eventually gathered around me, and I told them my legs weren’t working on account of heat-induced MS issues and that they’d have to dismiss themselves (this was a risky request).

“Okay guys, you are going to get to the classroom much faster than I am. You need to get your stuff, put up your chairs, straighten the desks and proceed slowly and carefully to the busses. If I find my room in disarray, or hear about you knocking any small children over en route to your busses, we will never, ever go outside again.”

With that they happily scampered up the stairs, to my classroom and, eventually, home. Since I didn’t find anyone subsequently flattened in the hallway, and my room was relatively organized when I finally arrived, I was impressed. For once my homeroom listened to my directions.

Peggy, though, didn’t scramble up the stairs. She and Kari waited for me.

“What are you gonna do, Miss Hooks?” Peggy asked the obvious question just as I was strategizing how to properly crawl up the stairs without ripping my stockings.

I tried to pretend I was someone else – someone without pride issues; someone who had no problem physically relying on twelve-year olds. “Do you two feel like helping me?”

The girls nodded in unison and Peggy answered quickly, “Yeah, what do you want us to do?”

Collectively we decided that Kari would return the chair to the second grade classroom, and that Peggy would help me get up the stairs. She offered me her shoulder while I grasped the chain link fence that led to the building and the two of us began a long trek up the stairs. I mumbled a few words about MS and the heat, and distinctly remember communicating how sorry I was that she needed to worry about how her teacher would get back into the building.

I put more of my weight on Peggy’s left shoulder than any child should have to support, and she literally dragged me – step by school lunch infested step – up the stairs and towards my surprisingly organized and empty classroom. I probably apologized on each step because that’s what I do. There are moments when my guilt is as oppressive as the hippos that had perched on my shoulders that afternoon.

“I’m so sorry about this, kiddo. I guess we can’t go outside when it’s this hot. You shouldn’t have to worry about me…”

Peggy stopped hauling me up the stairs and looked at me very sternly. She was suddenly as serious as I try to look when I’m threatening someone with detention and she with equal gravity,

“I feel good when I can help you, Miss Hooks. I want to help you. I think we all do.”

I didn’t say anything. I just kept holding onto her, and moving my feet, slowly, up the stairs. Safely back in my classroom, Peggy went home and I sat at my desk until I had the energy to erase and wash my boards. All the while, Peggy’s words repeated themselves in my head: I want to help. I feel good when I can help you. I want to help...

So I suppose, when it comes to sixth graders, my mom was right.

Friday, November 19, 2004

Learning to Teach

In Houston, Texas, the summer after I graduated from Colgate, I learned how to “teach.” I endured five-weeks of Teach for America boot camp and, for the lack of sleep, dining hall food, foot-long roaches, puke yellow-colored, urine smelling Moody Towers dorm carpet, 98% humidity, housing dramas, pedagogical guidebook sessions and Attucks summer school-related chaos, it was an enriching experience. Somehow I left Houston, Texas, with my nerves still moderately functional and the realization that my body works when other people need it to. It held up that summer. My autoimmune disease put up with stress, repeated nights of far too little sleep, and stifling heat and led me to the conclusion that Teaching for America was the right decision. (Even though I knew it wasn’t going to be easy.)

After a week’s insufficient preparation, three other idealistic college graduates and I were turned loose in a classroom of Houston Public School middle schoolers. I taught eighth grade social studies with another prospective teacher for America named John, and two other aspiring teachers taught Language Arts. Our students had failed their eighth grade year, and their promotion to high school was contingent upon passing summer school, and the TAAS. (Texas’ standardized test that gauged whether or not these students were ready for the next grade.)
From 12:00 to 1:00 the four of us taught small group literacy enrichment blocks. This was my favorite part of the day – I didn’t have to worry about engaging a classroom of 20 students with varying needs and interests, I just focused on reading and writing skills with a small group of four students. Two of the students in my group were the biggest trouble-makers in the class – Roderick and Carl the III. Carl, shorter, and rounder than Roderick, enjoyed completely socially unacceptable behaviors – he called people “gay” and shoved desks at girls. He gave my collaborative group a reason to drink profusely every Friday night. Behavior set aside, though, his warm, brown eyes matched his skin, flashed about inattentively, and yearned – silently - for a good night’s sleep. The white part of his eyes wasn’t completely white rather glossy and speckled with broken blood vessels; his pupils were never still. Carl III was prone to fits of rage at inane catalysts, was fourteen years old and stuck in Attucks Middle School, and knew, on a very personal level, of sadness. Roderick was different. He was wiry and tall, with equally soft eyes. He constantly reminded me that physical presence doesn’t constitute attendance. He knew the intricacies of the classroom ceiling better than the alphabet. Occasionally he started dancing in his seat, leave class on his own volition or stare for minutes on end at objects that didn’t move. In my opinion, Roderick and Carl III were the most endearing students in the class.

During our first literacy session, I gave the two of them a newspaper and let them choose an article to read. Carl refused on account of his “sore eyes.” Roderick just couldn’t read. He stumbled over words like “angry”, and couldn’t make sense of a whole sentence after he finally decoded the words. He never gave up, though. The size of our group mitigated his shame; he persisted and read on and never fully understood the content of the paragraphs he struggled through. I still have no idea how Roderick made it to the eighth grade, but I could tell that he genuinely wanted to learn. Over the next four weeks, Roderick’s literacy became my mission, and Carl III became my friend.

I gave up with the newspaper, bought The House on Mango Street, and worked on basic literacy strategies – strategies that I either invented on my own or learned about in afternoon classes. I worked to ingrain two things into Roderick’s amazingly receptive brain – 1. Slow down and re-read anything you don’t remember, and 2. Believe in yourself – these were the only two things I knew at that point. Two weeks later, after ten hours of reading and re-reading, and writing and re-writing, Roderick chose a story out of our book to read out loud. He asked me what I thought it was about, and I told him, briefly, my thoughts. With dead honesty, he looked at me and said,

“No, Miss Hooks, you didn’t get it.”

Roderick decided, for my sake, to re-read the story, and to stop along the way to point out my misinterpretation. He was entirely right – I had missed the point, solely because I was so distracted by his reading ability to actually listen. Roderick didn’t stumble over one syllable. When I commented on his sudden emergence into literary prowess, even Carl III agreed:

“When’d you learn to read, man?”

Roderick just shrugged, mentioned that he wanted to become a famous author, and – two weeks later – passed the standardized test (and my social studies class) for the first time in his middle school career.

Carl the III was different. Carl III, and his identical twin, Carl IV, were the only two students I organized a parent-principal conference with. My three co-“teachers” and I crowded into the summer school director’s cramped office, determined to communicate the severity of Carl III’s impulsive anger, and Carl IV’s tendency to swear at girls, to their tired mother. I knew though – that while I reluctantly concurred with each testament to their inappropriate behaviors – I wanted the identical twins around. Maybe I was intrigued by the fact that they were both on a first name basis with the Attuck’s school police officer, maybe I liked them because they were two hardened 14 year olds with piercingly soft, brown eyes. The boys were simultaneously too resilient to turn their anger inward, and too young to channel it constructively into something else. Regardless, as I listened to my collaborative members lament their occasionally atrocious behaviors, I felt the space around my heart tighten.

Carl III was not kicked out of summer school. He also – despite the fact that he read a lot more fluently than Roderick – did not pass the standardized test at the end of the summer. In his failure, though, he proved that a multiple-choice test does not accurately gauge someone’s brilliance. Carl III described diamonds as “reflecting sunshine like a new car’s bumper” and my own eyes as “deeper than the ocean.” We were reading one afternoon, and he asked me if there was a cure for multiple sclerosis. I told him there wasn’t. He glared at me, simultaneously angry and confused:

“You mean the doctors don’t know how to fix it?”

I was amused at his irritation and responded, “Nope. Not yet.” I smiled convincingly, as if to say, it’s fine, Carl, I don’t mind grabbing onto desks to preclude myself from falling over.

Carl was quiet for a second. Roderick’s eyes just darted back and forth between the two of us. Suddenly, Carl smacked the desk resoundingly. His voice elevated to a level that caused other literacy groups to stop their readings and stare:

“Don’t say that Miss Hooks. Don’t say there’s no cure…”

Still moderately entertained, I put my right hand on top of his chubby fingers, “Carl, there isn’t a cure, though. MS is just something I’ll deal with for a while – just like you’re dealing with summer school and people you don’t like that you’re stuck in class with.”

Carl jerked his hand out from beneath mine. His voice got even louder: “There IS a cure for MS, Miss Hooks! There IS! It’s the Lord Jesus, Miss Hooks. The Lord Jesus will cure you, but you gotta believe. You’ve really gotta believe. I know it!”

My first inclination was to laugh. I looked at his face, focused on the slight tremble in his voice, and suddenly took him very seriously:

“Carl, I pray you’re right. I really do.”

Carl III, whom my co-“teachers” dubbed an “angry little asshole”, was one of the brightest, most faith-filled, and most compassionate people I’d ever met. When he was upset in the lunchroom a few days later, I sat down with him and listened while he spun soggy spaghetti noodles around his spork.

“No one relates to me, Miss Hooks.”

Was I surprised that a 14 year-old eighth grader who passionately asserted that his teacher could be cured by Jesus didn’t have close friends at his lunch table? Not really. Did his insatiable loneliness make it harder for me to breathe? Absolutely.

I swallowed another breath of thin, school lunch-scented air, “It’s tough to find, Carl. It’s really tough to find someone to relate to. It’s especially hard when you’re young.”
He pushed his plastic tray across the table and left his spork intertwined with another pile of tasteless noodles.

“I relate to you, though.”

And that mattered more than anything I’d heard in a long, long time.

Thursday, November 11, 2004

The Art Museum

Make your problems the smallest part of who you are.
- Jack Gantos
My second year teaching I decided that the only thing potentially scarier than a day in the confines of the school building with my students was a day outside of my classroom. Despite the fact that my second year was, in retrospect, my best, I continued to avoid field trips as strategically as the earthworms I'd carefully step around in the rain. I masked worm-related paranoia beneath worm-related concern, just as I avoided potentially harrowing field trips with the selfless phrase, “No, I insist, you chaperone, the trip sounds like so much fun!” Secretly though, I knew that if my classroom management was tenuous within the confines of my classroom, it would be disasterous if my thirty sixth graders were suddenly (shudder) free. I avoided the Science Center excursion with ease – there were extra chaperones and my principal needed a warm body in a second grade classroom. The trip to Towson University was under control without me, and in all other situations I feigned valiance and offered to teach the extra sixth graders (or in some cases, even the class of second graders). I preferred a classroom filled with nose picking, illiterate seven year-olds to a day on a yellow school bus with the potential for sixth grade chaos.

When I least expected it though, it happened. The art teacher organized a trip to the Walters Art Gallery, and Brenda Payne, my sixth grade team teacher, was sick. The art teacher, who used approximately no foresight in planning the excursion, accosted me while I was diligently making my morning copies and singing Jack Johnson just loudly enough to irritate my principal.
She appeared next to me right before I hit the refrain: “Miss Hooks, I need another chaperone for our trip today. Mrs. Payne isn’t feeling well, and we need at least three adults.”

My response: “Hmm… who’s the third adult?”

“I don’t know. Sonny said his mom might come.”

Thought – isn’t this something that one should know before the day of the trip? I tried not to wince, her breath was rancid.

“If you need me, I’ll come, but I’ll need a wheelchair at the museum and someone to watch the extra sixth graders.”

She mumbled something about calling the art museum regarding the wheelchair, and told me that the bus would arrive by 10:00. Silently I thought, “You’re welcome” and I finished my copies.

The morning passed quickly and shortly before 10:00 I sauntered over to the art room. There, the field trip organizer was eating something garlic-ridden and organizing cans of paint. She didn’t look up.

I cleared my throat loudly. I didn’t want to startle her lest she drop the paint, “Are we going? Did you get confirmation from Sonny’s mother?”

She looked at her watch, stuffed more food into her mouth, and muttered something about the bus. I nodded and then opted for plan B: find my students and ask them what was going on. I left the art room and crossed the hall to Brenda Payne’s room. There, without adult supervision, thirty students were running in circles intermittently smacking each other and standing on Brenda’s no longer organized plastic, orange-colored chairs. Brenda was nowhere to be found, and I was dubious that I’d find a clear answer in her room:

I made my most threatening teacher-look and yelled, “Small children! You are acting in manner of wild beasts. You have three seconds to act civilized, or the trip is cancelled!” (They didn’t know that the bus was already waiting in the parking lot.)

Moderate silence ensued; enough silence to allow me to locate Sophie amidst the pandemonium. Sophie was my curly haired, rational, brilliant and mature favorite. I quietly asked her when we were leaving and why twenty-nine of her peers were currently unsupervised (while the art teacher organized her glazes alphabetically). Sophie, as usual, knew all the answers. Mrs. Payne was looking for me, Sonny’s mom was outside with the bus, and the art teacher had already reserved me a wheelchair. Mrs. Payne – though sick – had agreed to watch the remaining sixth graders for the rest of the day.

Grateful for Sophie, I militantly herded the small children from Mrs. Payne’s increasingly disorganized room, and lined them up in the hallway. I was very proud of Chad – he only leapt through the air to hit the emergency exit sign once en route to the bus. Their excitement level was even higher than usual. John made fun of someone’s butt, Chad (after landing firmly on his feet post-leap) hit, poked and otherwise irritated his obvious crush, and Nikki and Tiffany formed a staunch art teacher opposition. (Never mind the fact that as we approached the bus the poor woman was directly behind us.) There, outside of the school, standing in Baltimore’s 85 degree heat and smothering humidity, the art teacher finally attempted to organize the trip.

“Okay, we’re going to see some Asian art at the Walters Art Gallery today. I need three groups of ten students with each adult: one group with Miss Hooks, one group with Sonny’s mom and one group with me.” Before she even finished her statement, ten boys ran towards Sonny’s mom, and the remaining twenty girls formed a suffocating circle around me. As the art teacher patiently attempted to ameliorate the obvious discrepancy between my group of twenty and her own group of zero, Tiffany called her a witch. Tiffany’s peers apparently agreed. The art teacher, in vintage art teacher form, exuded no discernable emotion, rather instructed the "ungrateful" girls to return to the classroom. I stepped in between the scowling sixth graders and the art teacher, glared at Tiffany and followers, and slowly mouthed the word, “Apologize.” Then, after my wordless pleading and a series of muffled apologies from the eventually regrouped girls, thirty-three of us piled into the bus. We were a mere forty-five minutes late.

A brief bus ride later, I had sufficiently impressed my students by knowing all of the lyrics to rap songs on the radio, and I started to wonder why we were about to see Asian art anyway. Sarah, another freckle-faced favorite, asked me a question:

“Miss Hooks, can I push you in the wheelchair today?”

And before I could respond, a fight ensued:

“No, I’m pushing her! I’ve never pushed a wheelchair before and she already said I could!” (I had?)

Then Tiffany chimed in, “But I helped her get to her car the other day when her legs weren’t working!”

And so on.

The fight ended when I promised they could all push me, but they’d have to take turns. Two hours later, the trip culminated with minor horror on behalf of their respective pushing skills (Nikki smashed my leg into the door of the elevator and Tiffany almost knocked over a statue of Buddha). More importantly, though, there were a few revelations:

1. My students correctly answered the museum guide’s questions about Buddhism – they actually retained things I taught them.

2. My students eventually mastered the turning radius of a wheelchair, figured out how to back me safely into the elevator, and realized that, much to their collective dismay, the plush carpeted museum rooms weren't wheelchair friendly. They were equally appalled by the “pull-only” doors.

3. And I realized that field trips, even with garlic-ridden “witch-like” chaperones, poor organization and rented wheelchairs, were nothing to avoid.

Wednesday, November 10, 2004

The Wheelie

My third year as a sixth grade teacher was my last. The decision wasn’t a defeat to multiple sclerosis necessarily; it was a defeat to sixth graders and to an incompetent administration. I made my decision in October and enjoyed another eight months of school-related chaos and student-inspired disease revelations. My third year was my first year using my wheelchair semi-regularly. I set up my classroom accordingly, and used the chair mainly to get from my classroom to the distant bathroom, or to pick up my students from their resource classes. Occasionally I used it to monitor student progress during cooperative learning activities, but with coats and backpacks and notebooks and handouts strewn about, negotiating the chair through the close-quartered classroom was difficult. My students loved my wheelchair. Usually, in fact, if I didn’t guard it closely, one of my kids would steal it from behind my desk and wheel around my room at mach six before I could reach the chalk and scribble threateningly on the detention board.

One winter afternoon, I wheeled to the cafeteria to retrieve my second group of sixth graders from lunch. I had used my thirty-minute lunch break not to eat, rather to push myself to and from the main office making copies. I kicked myself through the door to the lunchroom right as 6-02 was lining up along the wall next to my classroom. I was practically sweating from my effort to cram 78 things into a half-an-hour, and my kids were waiting for me impatiently. A few of them were playfully fighting each other, and others appeared to have angry ants in their pants. They were moving around so much I was convinced that some type of stimulant had mysteriously slipped into the school lunch. I gave my thirty sixth graders the sternest face I could muster, and demanded that they stop writhing around and prepare for an afternoon of serious learning.

They listened to my request. Mostly. Except for Stevie. Stevie stood at the line’s center with his best friend, Brandon. Stevie loved my wheelchair. Actually, he was the one who initially removed it, piece by piece, from the trunk of my blue Nissan and constructed it in my classroom. He had studied the chair for a few minutes, furrowed his twelve-year-old brow, and then pulled the cord in the back. The seat bent upwards and Stevie slid the wheels on effortlessly, all the while he explained exactly what he was doing with more patience and clarity than I ever used while describing the five-step writing process. Stevie was difficult to teach because he had the uncanny ability to see the other, less popular, sixth graders surreptitiously picking their noses. Then he’d quietly point at the nose-picker, and learning would cease until his twenty-nine peers would stop giggling and gaping. Stevie also back flipped off of a table in my classroom before dismissal one afternoon. He landed the flip like a gymnast, but I was appalled with myself – that a third year teacher failed to notice a small child climb a table was another testament to my year end’s requisite career move.

In the cafeteria, Stevie innocently asked if I knew how to “pop a wheelie” with my wheelchair. I told him I didn’t, repeated how important it was that learning commence, and continued towards my room. Stevie didn’t move though, and neither did his classmates. Stevie’s question quickly commanded the attention of the rest of the class. Brandon spoke next,

“Try one, Miss Hooks – they’re fun.”

This comment was followed by numerous words of encouragement from the rest of the class, and culminated with my authoritative answer:

“We have important things to do, and I don’t know how to do one anyway.”

In retrospect, my response was completely ineffectual at redirecting the attention of my students away from the wheelchair and towards the all-important lesson on Ancient Egypt.

Stevie left the line and grabbed the back of my chair. “You just push yourself forward and then pull back hard, like this.”

(He did it, I tried neither to laugh nor shriek.)

I was secretly amused at their interest in this, and, rather than prioritize Egypt, I agreed – per Stevie and Brandon’s request – to attempt my first wheelie. The class (minus Stevie) was in a neat line, and by this point they’d stopped fidgeting, writhing and fighting with each other; they were focused entirely on me. Using Stevie’s words of encouragement and direction, I pushed myself forward and then pulled back quickly. Then, rather than lifting the front wheels gracefully off the ground while appearing cool and lithe in my green wheelchair, I flipped over backwards and landed directly on my head.

Luckily I wasn’t wearing a skirt.

Not so luckily, the next group of children had already entered the lunch room (at exactly the same time I landed strategically on my head). My students were motionless and silent. They were convinced I was dead. Before I could prove them otherwise, I heard Brandon whisper:

“Stevie, we killed Miss Hooks.”

Then, still upside down, I erupted into laughter and managed to yell (while laughing), “I TOLD YOU I COULDN’T DO A WHEELIE! GET ME UP!”

Steven and Brandon offered me their hands, and the line changed from a relatively straight and orderly formation into a circle of gaping and appalled (although certainly amused) sixth graders. Even Roxanne, the secretary in charge of lunch duty that day, noticed me on the floor. She grabbed the microphone from the stage (the lunch room doubled as an auditorium) and drew every child’s attention to the mess that was myself on the cafeteria floor:

“Hooks, what on earth are you doing on the floor?”

I have no idea what I taught that day. I’m sure my students don’t know either. I do, however, remember the girls in my class that gathered around my head to ask if I was okay, and the firm grasp of Brandon and Stevie's hands that pulled me off the ground.

My pride was slightly damaged – for obvious reasons. But teaching in a wheelchair wasn’t necessarily all bad. I knew I loved my students. Had I not ended up on the floor of the cafeteria with thirty concerned kids trying to get me up, I might not have learned that they loved me back.

A "Real" Teacher

During my first year as a "Teacher for America" in Baltimore, there were rare moments when I didn’t leave my trailer-turned-classroom thinking: this is the single most miserable experience of my life. Sadly, this realization rarely had anything to do with the actual teaching process. In fact, it rarely had anything to do with my own students. Which led me to the disheartening conclusion that I should seriously consider quitting my job… but MS is expensive and I needed the health insurance.

Sometime in March, I literally stumbled out of my portable classroom and began the short, though laborious, hike to the main building. Actually, there was nothing laborious about the hike except for my inability to successfully navigate (or dodge) the swarm of crazed first graders who were outside for recess. There must have been some type of magnetic field surrounding my body, because no matter how hard I attempted to project irritation, I still had to pluck at least six grubby children from my legs before reaching the sacred door that symbolized my hour of freedom. This particular day was no exception.

A small blonde haired child with dark brown roots, whose head was far too large for his body, attached himself to my (slightly too short) navy skirt: “Excuse me. Excuse me, are you a teacher?” He sounded like a high-pitched alien when he spoke.

And suddenly he had several friends with him. The one who spoke next still had saved the majority of his lunch on his face for later: “Yeah! Are you a real teacher?”

This made me laugh (amidst thoughts of: why is your lunch still on your face? Please don’t touch me), and then I replied, “Of course I’m a real teacher, silly, what else would I be?”

Suddenly another child appeared, he was very chubby. He might have stored his lunch in his cheeks: “You fell over once, though.”

And his high-pitched friends all echoed his point: “Yeah, yeah! We saw you!”

The saddest thing about my resultant thought process was that I couldn’t isolate which time they were referring to. Suddenly I took them very seriously. I thought at first that they doubted my status as a “real” teacher because of my short skirt, or maybe because they'd heard the previous racket that resonated from my classroom. And, coupled with the fact that one of my eighth grade students was recently escorted from my classroom by the school disciplinarian for wielding a lit match during my class, I honestly had to hesitate before affirming my own status as a “real” teacher. That they thought I wasn't real because I fell over, though? That was absurd.

I squatted down to first grade eye-level: “You mean in the computer room the other day?”

Four pairs of big eyes nodded in unison.

“Well why can’t teachers fall over every once in a while? Don’t you fall over sometimes?”

Their heads continued to nod (this might have been a result of ADD, not agreement). And the big-headed child, with two-toned hair stepped forward:

“Well, were you okay? Are you hurt?”

And this question instantly dissipated my concern for their collective absurdity. Because amidst the atmosphere of general hostility and complete self-involved ignorance which characterized many of my experiences at that school, there was a moment of genuine compassion.

Thursday, November 04, 2004

A Silent Minority

The Americans with Disabilities Act (ADA) is a Federal civil rights law that prohibits discrimination against people with disabilities in everyday activities, such as buying an item at the store, going to the movies, enjoying a meal at a local restaurant, exercising at the health club, or having the car serviced at a local garage.

My mom recently asked a friend why, if the ADA has existed since 1992, things are still so inaccessible. The friend’s answer was succinct: “People with disabilities comprise a silent minority.”

When my mom relayed the story to me I scoffed at the word “silent.” I’m the opposite of silent. My roommate needs ear plugs to study while I talk on the phone, and my laugh is so cacophonous that entire restaurants filled with people have stopped chewing to turn and gape at me. I’m decidedly extroverted, yet increasingly disabled. Loud + Disabled = A Silent Minority? I don’t think so. Plus, I’m as open about my disability as possible. Short of tattooing “I have multiple sclerosis” across my forehead, I do everything I can to assure that strangers understand why I fall over in public, why I use a wheelchair to grocery shop, and why I need someone else’s barstool in a bar.

Clearly I have no problem discussing my disability with anyone who asks (or happens to be in the way). But when it comes to advocacy my mom’s friend was correct: I am silent. Not only am I silent, I’m apologetic. I’m riddled with guilt whenever someone stands in the rain for an extra few minutes to open a door for me, or when someone in Safeway reaches an item off of the top shelf for me. I genuinely don’t want to ask someone for their seat in a bar, and I feel horrible asking friends to take me to the bathroom in restaurants. At this moment, I’m the only 26 year-old I know who genuinely needs assistance getting from point A to point B to ensure that I don’t wobble into a stranger, lose my balance and fall over or, most horrifying yet, injure myself in a bathroom and rely upon an ambulance to extract me from a hotel room (it’s happened). Often I use my wheelchair and get myself stuck between doors, or find myself asking for help when something remains just out of my reach. Invariably, whether I’m grabbing onto a stranger’s head for balance, or asking someone to open the door a little wider so I can dislodge myself from an entrance, the action or request is always followed by an overt expression of guilt that boils down to a repetitive, “I’m so sorry.” Then I smile as sweetly as possible, internally remind myself that I didn’t choose to knock the guy’s toupee off, and continue on my way.

One of my teacher friends refuses to let his students use the words “I’m sorry.” He says there are enough “sorry” people in the world, and if you’re truly contrite it is better expressed through the words “I apologize.” When he told me this I laughed, but didn’t necessarily agree. It made me think, though. It also made me increasingly cognizant of how often I use the phrase “I’m sorry.”

Sorry, according to Roget’s Thesaurus, connotes both regret and remorse. It’s also synonymous with sadness. In all cases, the word fits my circumstance: I truly am sorry that my friends have to help me get to the bathroom, I regret my efforts to get through heavy doors with my wheelchair, I’m remorseful that I’m not able-bodied, and when I want to purchase a gift at an inaccessible store, my frustration yields a certain level of sadness. Having multiple sclerosis makes me mourn things I never used to appreciate: shoveling snow, vacuuming, shaving my legs without sitting on the floor of the tub, or even cleaning the toilet without fatigue. I watch my roommates take the garbage out and get ready to go out without constant concern about whether they’ll be able to stand later that evening. They’re able to clean the house, work out, help with my laundry and shower – all without falling over. This, to me, after a mere seven years with MS, is remarkable. At the same time, though, I clearly remember my disdain for such tasks: no one enjoys cleaning the toilet, fatigue or not. Which is why I feel so sorry – partially for myself (because the only thing worse than cleaning a toilet is wishing you could) but mainly for the friends and family members I impose myself upon constantly.

It’s interesting to me how guilty I feel; even when others love me unconditionally. I know my mom will still love me after she goes up and down the stairs for the fifteenth time collecting imperative things that I’ve forgotten from my room, but I still feel awful. Consequently, I apologize. My resultant overuse of the word “sorry” once caused my roommate to unintentionally fling me on the floor of a restaurant because she moved abruptly to admonish my sixth consecutive utterance of the phrase, “I’m sorry” (I kept stepping on her heels). Her sudden movement caused me to lose my balance entirely (which was placed, in my opinion, burdensomely, on her shoulders) and I ended up underneath the bar, across the room. I feel even worse when I startle strangers – when people who don’t love me unconditionally have to get the Ben and Jerry’s out of the freezer for me in the grocery store, or when strange life guards at the YMCA have to scrape me off the slimy pool deck because my legs won’t support me and my feet refuse to work on slippery surfaces. People have held their umbrellas over me while I struggle with my slippery metal wheelchair in the rain, have pushed me out of puddles when I’m stuck, and have pulled and pushed me up stairwells. I feel like these poor people will suffer at least some level of emotional trauma as a result of my occasionally tear stained face, or that their lives will forever be tainted by the strange girl who lost her balance and grabbed onto them in the Gap.

Someone wrote once that as a person with a disability, you “have to be the kind of person that others want to help.” For me that translates to openness about my disease, to constant apologies regarding my needs, and to an overly active sense of humor – all of which I use to compensate for my self-acclaimed burdensome nature.

I thought about these things a lot: whether I do, in fact, represent part of a “silent minority,” why I feel so guilty, and why my ex-boyfriend told me I “apologize too much.” And after thinking about it and talking about it and even praying about it some, I decided that my definition of the word “silent” was limited and that my mom’s friend, on some level, was right. I view the word silent as exclusively synonymous with the word “quiet” (which I’m not). But silent also means “unvoiced” and “unspoken,” which, when it comes to things I need, is true. I am far more likely to apologetically ask for help, than liable to demand that restaurants/stores/gas stations/bars etc. are made accessible. My roommate summed it up concisely when she suggested, “You make up a population of silent people because you already feel too damn guilty about asking for help.”

I wonder, if the ADA’s objective were achieved (it was, after all, passed twelve years ago), would I need to be “the kind of person others want to help”? Would I need to constantly apologize, or make sure to be open and funny and warm if I could achieve my objective without assistance? I doubt it. I’d be able to reach things in grocery stores, get jeans off the shelf in the mall, and get myself through doors at the gym. I could save my overuse of the word “sorry” for my roommates, continue to mourn my usefulness in the kitchen, and help myself in public. I do comprise a silent minority right now – I am careful with my energy and I’m particular about the battles I choose to pick. I wonder, though, when this will change; when the ADA will offer more than lip service and will provide an entire population of people with disabilities the chance to stop feeling guilty all the time and accomplish things on their own. In the meantime, maybe it’s time that I wean myself away from the phrase “I’m so sorry” and speak up about the things that really need to be said.

Wednesday, November 03, 2004

Impatience and Hope

I started my last journal with a T.S. Eliot quote: "I said to my soul, be still and wait without hope, for hope would be hope for the wrong thing."

Apparently when I started the journal, I found the quote applicable. The words make sense – especially since, as strange as it seems, my journal is actually a written compilation of letters to God rather than the deep inner working of my mind written to no one in particular. T.S. Eliot is right, I do often hope for (and pray for) the “wrong” things. Plus I'm edgy and impatient and occasionally hostile when my prayers don't yield what I want them to. I wonder, though, what life would be like if I were able to enter some meditative-type/acquiescent stage of my life and just wait around contently for things to play out the "right" way.

I juxtaposed T.S. Eliot’s quote with an entry that asks God for the strength and guidance to:
1. Complete my book, write and mail query letters and proposals and find an ideal-type agent and publisher.
2. Find a job that capitalizes on my strengths and allows me to give of myself to others.
3. Learn to be more proactive rather than reactive when faced with challenging situations (i.e. anticipate such challenges and learn to deal with them in an effective and reasonable fashion rather than throwing temper tantrums etc.).
4. Heal physically.
5. Write, give, reflect and spread love.
6. Love at least one person more than I do now. Learn to accept and appreciate love in return.
7. Cultivate grace, willpower, and improved character.

All seven of those prayer requests necessitate a certain amount of hope, right? They also require patience and faith and, in some respects, self-motivation. Maybe T.S. Eliot was right, and we should just sit back and wait for the things we need, but I’m worried about what I’d do in the interim. I despise apathy.

Plus, I'm willing to admit that sometimes I hope for the wrong things: my ex will not fall magically in love with me, I most likely will not wake up tomorrow morning without MS, and unless I make a few phone calls and continue to write, I will likely never find my dream job. But something pushes me to embrace life in spite of loneliness, a neurological disease and a nonexistent publishing contract. For me it's hope. It’s the fundamental belief that, as the unknown author purports, “Everything will be okay in the end. If it is not okay, it is not the end.”

In the meantime, I’ll most likely wait with hope, a moderate amount of predictable impatience and the acknowledgement that, until my limbs refuse to cooperate at all, I will not “be still.”

Tuesday, November 02, 2004

Warm Towels and Cold Showers

I was listening to Maroon 5 in my car last week, and one of the songs includes a line that says: How does it feel to know you'll never have to be alone? Post-song I arrived at the pool. Then, for an entire mile and a half back and forth through the 50 yd pool, I had the same line stuck compulsively in my head: how does it feel to know you'll never have to be alone? Over and over and over again...

Which got old after about the third lap.

When I got home that night though, I asked my roommate, Anique, what that feels like - to never have to be alone. She's recently engaged and has been involved in this amazingly blissful and drama-free relationship for two and a half years. When I asked the question she was on her way out the door, and I was itchy from the overly-chlorinated pool, so we went our separate ways - Anique to her fiancee's house, and myself to the shower. I asked her for a proper analogy by the weekend.

The next day, though, I changed CDs in my car, and forgot about the question entirely. Anique, thankfully, didn't.

On Saturday night, after a full day of wedding-related shoe shopping, the two of us sat down for Mexican food and margaritas at a local restaurant. She turned to me and said, "Do you remember the question you asked me? The one about what it feels like to never have to be alone? Well I have an answer..."

She then launched into the following: she talked about taking a shower in the middle of the winter, and running out of warm water towards the very end. She talked about how it feels to rinse the conditioner out of your hair, start to get goose bumps, and quickly reach out of the shower to grab your towel (which, you discover, is missing). Right when you're about to start screaming for your roommate, or the mysterious God of shower-remedies to bring you a towel, and you're most definitely nearing hypothermia, the door opens and your fiancee enters. Before you even begin your towel-related tirade, he hands you one. One that he just removed from the drier. He, with no prompting, hands you a big towel that's warm and fluffy and smells like Bounce drier sheets.

That, she said, is what it feels like to never have to be alone. It's security. It's inevitable warmth when you think you're likely to freeze to death, and it's knowing that someone out there is thinking about you even when you're too absent minded to think about yourself.

She might have said more, but at that point I was too busy making a public spectacle of myself crying hysterically to listen properly. I'm not predisposed to public crying fits, honestly. I embrace my independence. I love my freedom and my friends and my own schedule etc. I have a strong faith and a beautiful family and friends that love me unconditionally... but I can't think of too many things that compare to a warm towel after a cold shower. I really can't.

Why Baltimore is Not The Third Ring of Hell - Thoughts on Where Live...

I have defended Baltimore since before I moved here. I grew up riding horses and working in a local grocery store in Ithaca, New York. I went to college at Colgate University in a town that contained more farm animals than people and enjoyed my only collegiate “city” experience in a place called Wollongong, Australia, that no one has ever heard of and that I couldn’t pronounce properly until last week. When I was accepted to Teach for America in 2000, I selected Baltimore as my first choice out of fifteen possible places to end up. My riding instructor in Ithaca had lived down here in the early ‘80s, she worked at Pimlico and lived on North Ave. She was appalled by my decision:

“Why on earth did you choose Baltimore? The people down there are unfriendly. Parking is a pain, my car was impounded twice, and someone broke into my car to steal horse blankets.”

I had my reasons, though. And even though I’d never so much as visited “Charm City,” I never second guessed my choice. 1. I wanted to get out of rural New York before developing that weird upstate accent where the “a” is replaced by a nasally “eh” sound. 2. I have multiple sclerosis and needed a city where I wouldn’t need to rely on public transportation and/or my legs to get me places. 3. I wanted access to a qualified neurologist (since my previous doctors had recommended two specific drugs that simultaneously combated not my disease but each other). 4. I didn’t want to be in a different time zone than my family and friends. Baltimore was the perfect choice on all fronts. I explained my rationale to my riding instructor, and countered her arguments with:

“Ithaca is filled with crunchy tree huggers, parking is a pain in any city, I don’t know what ‘impounded’ means, and your car is a stupid place to store horse blankets anyway.”

Four years later I stand by my decision. Yesterday when my friend characterized Baltimore as “the third ring of hell”, I couldn’t help but feel a twinge of anger; especially since he spends his free weekends in New York City. As I reflect upon my most recent trip to New York over Labor Day weekend, I recall $20 enchiladas and shot-glass-sized margaritas at a sub-par Mexican restaurant but most especially, I remember my experience in New York’s Penn Station.

While I’m not wheelchair “bound” at this point, I’m definitely wheelchair reliant, so I had my wheelchair with me for the weekend. When my cab dropped me off at NY’s Penn Station, I assembled my chair and plopped my backpack in the seat. I pushed my chair across the sidewalk to the station doors and discovered that there was no elevator near the entrance. I’m sure there is an elevator somewhere, I just couldn’t find it and I was trying to move at a calmer Baltimore pace. Consequently I was running late. I thought I’d carefully maneuver my chair backwards down the escalator, but it wasn’t moving, and the stairs looked like an MS deathtrap. After I’d politely begged a muscular stranger to carry my chair down the stairs, I (awkwardly) reached the main level of the station. There I discovered that my train was already boarding (ten minutes early). A hoard of people gathered in front of the only down escalator that led to the platform. I, still pushing my chair, reached the hoard and packed myself in among the other pushers and shovers.

When I reached the ticket collector I asked him for help – I’m not good at taking myself down escalators, much less myself and a wheelchair. Ticket man said no, he had to collect tickets. Meanwhile my chair and I were blocking the line: no one else could descend the escalator unless I moved. The line of people seemed extremely irritated with me at this point and I heard small “hmpf” and “tssk”-type noises while my eyes started to burn. I calmly explained my situation to ticket man – that I had MS, that I couldn’t find the elevator, and that I was literally stuck between the increasingly impatient mob of people and the escalator. He reluctantly agreed to help (he had no other option - I was honestly stuck) and took my chair down the moving steps while I willed my face to return to its normal, less humiliated color. Once my chair was safely deposited on the correct platform, I grasped its handles for stability and pushed it shakily towards the “handicapped-friendly” car. I finagled the chair over the foot-long gap between platform and train, and hung a right into the car to find a seat. There I discovered that the “handicapped friendly” car wasn’t friendly, rather completely inaccessible. The little area for luggage/wheelchairs was taken up by a new set of seats, and my chair was too wide to fit down the aisle. Once again I was stuck. And the “tssking” “hmpfers” were breathing down my neck. Desperate to remedy the situation I pulled the wheels off, folded the wheelchair as much as possible, put the body of the chair on the seat and collapsed onto the floor. Then, happily, the impatient crowd stepped around me and located seats where they could intently focus on text messaging their friends.

At least fifty people stepped around me, oblivious to the sniveling heap of girl on the floor. At least a dozen of the fifty looked visibly annoyed. Of the group, only one stopped to help. I tried to tell him everything was under control, but the wheelchair on the seat was his cue to ask twice. A few minutes later, wheelchair carefully stowed in the shelf on the other side of the train, he and I sat across from each other and talked. I apologized for being such a basket case and for the wheelchair grease on his jeans, but for the most part we just enjoyed each other’s company for the three hour train ride.

How can a group of people be that frantic to leave a city? I understand impatience, I really do, but when it interferes with basic human compassion I start to worry. And, as I battled the crowd and the stagnant, humid air that circulated throughout Penn Station, I thought I had descended into my own “third ring of hell” and started to appreciate Baltimore just a little more. No one’s ever shoved me or my wheelchair to get somewhere three seconds faster. The red caps at Baltimore’s Penn Station make sure that my bag and I reach an appropriately accessible car, and the elevator to the platform is easy to locate.

Besides the smoldering humidity, there’s something different about the atmosphere here; it’s warmer, yes, but the warmth is measured by more than just a thermometer. Warmth, in my opinion, is a Baltimore taxi driver linking my arm to get me safely to the door of my row house, or the hostess at Koopers seating me as quickly as possible because she knows I can’t stand up for too long. It’s the customer service representative at BWI running me and my wheelchair to my gate so I wouldn’t miss my flight, or the Safeway employees helping me get my grocery bags to my car. It’s someone at the pool helping me assemble my wheelchair, or my favorite bartender at Max’s handing me a barstool before I accidentally wobble into an innocent stranger. People here don’t seem as brusque and rushed – maybe that’s where the “charm” comes from. My riding instructor was right about the parking here, and I never leave anything valuable in my car, but I stand by my initial decision, and maintain that Baltimore is not unfriendly.

The guy who helped me on the train last week lives in Maryland. I can’t say I was surprised.