Electric City: Going for Broke(rs)

Today I called a broker about viewing and renting an apartment on September 16 in Manhattan. In a awkward display of ignorance and nervousness, I not so eloquently relayed my and Dobler's list o' demands for our new place. The lady seemed nice -- very friendly considering she was talking to a moron. She says she will get in touch with us as soon as some place meets our criteria, so we'll see.

I found the agency -- Phat Cribs Realty -- on Craigslist and visited their Web site just to see how legit they were. I was obviously pleased. The agent also gave me a list of the documentation needed to rent, so we can start organizing ourselves. The only hang-up we're going to have are letters from our nonexistent employers. Otherwise, I just made our first real step in getting to New York.

Electric City: Hot Wheels, Summer in the City

When I think about the summer, I think about New York. It's a peculiar thing, as I have only spent two of my twenty-four summers in the city. I should just as much think of Myrtle Beach or my family's small, sweltering ranch house in rural Pennsylvania come June and July, but I don't. I may remember our above-ground swimming pool with its hand-me-down deck, but I have memories of humid evenings spent alone in Washington Square Park.

Circling the fountain, I try to find a place where few people sit yet where the breeze occasionally blows a refreshing mist across my face and arms. I need to be as close as possible, but my foot plates bump against the two-foot-high edge. This is close enough; it has to be. I'm not terribly bothered by the fact that I can't dip my feet in the water. I like to keep my shoes on anyway. I'm here to observe. Sometimes I watch two lovers read silently side-by-side and wonder if they will discuss their texts over a lemon ice later that night; or a toddler in his swimming trunks innocently teasing a yellow lab that just wants to stay cool. I think how much I'd likely bite that child if he kept dumping plastic cups full of water on my head. Then sometimes a group of New Mexican tourists attract my attention -- student musicians and their teachers -- and we discuss music and sight-seeing and how Rent is too risque for impressionable youth. I disagree, but they're Mormons, so I smile and nod and wave goodbye when they retire to their hotel at 7:30 p.m. Still other times I just close my eyes and listen to the muffled sounds of downtown -- the traffiic three blocks over or a guitarist on the east side of the park; the argument two black men are having about who sells cheaper seed-bead necklaces or the wheels of a closed hotdog cart rolling toward the arch. Every now and then I am interrupted by the fountain's spray. This seemingly idealized scene, to me, is summer. I even enjoy the salty garbage smell of August.

I felt a connection to the city from the first time I vacationed there for my sixteenth birthday, because I had found a place where I could combine my emotional independence with physical independence. No more being lifted in and out of my van; I could take a bus, or, better yet, "walk" wherever I needed to go. I awaited the day when I could live in the city permanently, and while I'm still working to secure myself a life and an apartment, I am fortunate to have spent two summers living in my home.

Next month, Dobler -- my boyfriend -- and I will be venturing into the city to apartment hunt. We've spent the last three months scouring Craigslist, and soon it looks like we're going to have to hire a broker. I know, I know. I'm not thrilled about it either, but we have specific requirements that need to be met, and the odds of us finding a cheap, wheelchair-accessible, Manhattan apartment near transportation are very low. We have one day to view places and limited resources, and now we have to further stretch those funds in order to pay an agent. It's worth it, though, to see New York in the fall.

Here's why: you're wasting my time.

“I was just thinking about how many days of my life have been wasted -- not just because I'm a loser and I have no ambition and I don't do anything, but because I, like you, am forced to wait for everything that happens to me. … We wait for everything, because we wait for people. The other day I was sitting in Green’s car, in silence, waiting for her to get my chair out of the trunk, and I thought, How many minutes have I spent like this -- just waiting for stuff?” -- Pudlak

The above excerpt is from the beginning of a conversation with my friend Pudlak. Pudlak is a guy who likes to sit in his room and ponder his life and where it’s going, so conversations such as this are not uncommon for us. After our talks, however, I rarely think about them in depth again. But in light of recent events in my own life, I couldn’t dismiss his latest observations as easily as I usually do. In fact, I began to wonder just how much time of a disabled person’s life -- particularly mine -- is wasted and the repercussions it has whether they be internalized frustrations or restructuring an entire day’s schedule.

Recently I spent the weekend with my boyfriend, who was doubling his role as both a lover and caretaker. We had plans to go to dinner with his family one evening, and after he got off work that day we had an hour and a half to get ready. No problem, I thought. We’ll take an hour nap, then it will take no more than 15 minutes to wash my face, brush my teeth and change my shirt. I need help doing parts of each of these -- wetting the washcloth, putting toothpaste on the brush, changing the shirt -- so 30 minutes before departure time I started the “we-better-get-up-now” nag-fest.

I became increasingly frustrated as time passed, yet we remained on the bed. When it comes to time management, we are opposites. I like to be dressed early; he does not start getting ready until three minutes before (or after) we are supposed to leave. Usually I am not relying on him for my care, so I have adopted a “screw-you-if-you’re-late-because-I’m-ready” attitude. But that day I simply had to wait and, as time passed, mentally eliminate unnecessary chores from my list, even if we did end up doing them, which made us even later.

I do not want to play the blame game in this situation, and I especially do not want to paint my partner in a negative light, as this is just one of thousands of examples involving a multitude of participants. However, lying on a bed knowing I need to accomplish certain tasks but lacking the ability to do so irritates me. Say you have plans to help decorate for a birthday party with three friends, and the one person was supposed to pick you up and drive you to the party’s venue. The driver is late getting to your house, and the other friend keeps calling and asking where you are and saying they need help decorating. You are helpless.

Waiting is an inevitable part of living with a disability, and it’s something that must be accepted. In college, I lived in a residence hall where the entire first floor housed disabled students -- “gimps.” The gimps residing in the hall all needed personal care throughout at least some portion of the day, so the college provided state workers -- PCs -- to assist the students 24 hours a day. Of course, with a ratio of 45 gimps to 4 to 9 PCs, not everybody who needed their ass wiped or their pencil picked up could be immediately assisted, so the experience was an exercise in patience.

Going to the bathroom took priority over almost everything -- seizures or falling out of a wheelchair not included -- and sign-up sheets [pink denoting a.m. hours and yellow denoting p.m. hours] were provided in the PC room, where the workers rested, for students to schedule when they wanted to go to bed and get up in the morning. Pretty much anything could be written down on the sheets. If I knew I wanted to take a shower at 8 p.m., then I wrote “Rachel -- FS [full shower]” on the yellow sign-up sheet.

The dynamics of the first floor were complicated, though. Unwritten rules existed such as no more than two showers every hour -- otherwise there wouldn’t be enough workers to cover the rest of the floor -- and if you wanted to be in bed at exactly 11 p.m., you best have been within the first three people to have signed up. Gimps learned quickly that while waiting is unavoidable, there are strategies for surviving while wasting as little time as possible. The main two being sign up early and sign up for everything you know you’ll need throughout the day -- even the jacket you’ll need help putting on at 1:30 p.m. before your 2 p.m. class.

During my four years in this particular residence hall, it amused me how difficult the transition from receiving attention immediately to having to wait anywhere from five to 30 minutes was for some gimps. Many of the students had come from homes where they were the only child or only disabled child, and so their parents often seemed to have catered to them. Fortunately, I did not come from this kind of home. My family instilled in me the need for patience, and if I wanted something that was not necessary, I needed to wait my turn. In fact, I was spoiled by the ever-present PCs, and it thrilled me to be able to make my own schedule as opposed to simply following my mother’s.

Needless to say, coming home for breaks proved to be a challenge. While at school, I had learned a new form of waiting. I planned my waiting around the rest of my life, so while I waited for one thing, I could carry on other plans. At home my requests and schedules were questioned and delayed, and I often wasted more time explaining why this new way of dressing me is much easier or “yes, I do need that book positioned just so on the desk, so please stop contradicting me” than it actually took to perform such petty tasks. Also, because I was reintroduced to a world that was no longer mine, my ability to fill the waiting time with social or academic activities was lost.

After I graduated I decided that I could no longer live at my family’s house. I had had four years of independence, so I decided to try and maintain it by renting my own apartment and managing my own personal care. Hiring and scheduling my own PCs differed from the residence hall, because unlike on the first floor, the 24-hour availability did not exist. I had to establish set hours at which people would come, and if I needed something before that time I would either (a) try to call a back-up worker or (b) suck it up.

Similar to the residence hall, however, was my ability to plan my day around when my PCs were scheduled to work. Times existed, though, when, despite my unchanging routine, I still found myself waiting. Workers would call to say that they were running a few minutes late or that they could not make it that night. When I was informed early enough, these inconveniences were relatively minor, because I could usually scrounge up another PC. God help the gimp that doesn’t have a back-up. But situations also arose where the call-off was too late to be covered or, worse yet, I was forgotten, and those times, to put it bluntly, fucking sucked. Not only would I not get the necessary care -- and believe me, holding urine for 12 hours because a 3 p.m. pee PC forgot you while she went to Walmart is not fun -- but the time I had set aside for this chore could have been put toward something pleasant and social.

But productivity does not always result from waiting. Often the time spent depending on others promotes laziness and boredom. These feelings may emerge because the actions needed to be productive are actually being waiting for or because so much time is wasted waiting that it creates a slothenly mood. My current living arrangement provides a prime example of this. I moved home this summer because my lease ended in May and because I wanted to save money in order to move to New York City this September. I have already discussed the repercussions of living with my family, so it should come as no surprise that my mental wellbeing has suffered.

My family’s house is accessible only on the inside, meaning it does not have a ramp to the porch or driveway. Also, we live in the country, so even if I could get outside, the nearest entertainment is 10 miles away. I do not drive, and there is no transportation. So what is my day like? After I get up at 6 a.m. before my mother leaves for work, I wait for my brother to wake up and help me prepare breakfast or lunch, depending on the time. I lie down from 3 to 5 p.m. and wait for my mother to come home, when I can go to the bathroom and eat dinner and eventually go to bed. Sure I have the computer to keep me busy, and I apply for jobs daily, but the environment does not promote independence and activity.

Personally, I have discovered that location plays an integral role in my independence. I cannot thrive in rural settings, because my personality enjoys quick-paced environments. Moving to New York City, therefore, would not only allow me to direct my own care in an accessible apartment, but it also offers public transportation -- a necessity for independence -- and opportunities both professionally and recreationally. Instead of wasting an indefinite amount of time waiting for a sibling to come home and drive me to get a haircut, I can spend 15 minutes at a bus stop and go there myself.

I realize that able-bodied people spend much of their lives waiting and depending on others and that nobody deserves special treatment, but it cannot be denied that individuals with a disability offer a more extreme example of dependence, even if the person is by all accounts considered "independent." While some individuals can accept the static, others need to fill their time. The trick is making the wait as beneficial as possible.