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.
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.
posted by Claire C. Cake at 1:24 PM
2 Comments:
I always say my life would be so less fusturating if I didn't have to wait on people. I don't mean wait for replies or answers, but for then to help with my laundry so I have clothes to wear or wait for my mom or dad to help with dressing.... and my house isn't accessible on the inside, we have a ramp going into the back door but a 2 story house. So it's nice to know my fusturation; isn't just me...
I can't think of anything brilliant to say about this, so just know that I appreciate it. It's well-written and honest, and as per usual, something I never even stopped to think about. I think we all have something in common as this point in our lives; we're waiting on circumstances to change, whether they be other people, money or yet-to-be-developed bravery. I really like that I can always relate to what you write about, because our trials and tribulations are strikingly similar at their very core. Blog on, girlfriend.
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