Needing Help and the Perception of Competence
Everything in my life always seems to take on another level of drama. The other day I fell while getting into my wheelchair because the person who was helping me chose not to listen to me when I told her there was a problem. She chose to ignore my warnings that I felt like I was falling, and so I ended up embarrassingly sprawled out on the linoleum floor of my dorm room, dreading the next steps. I sat sprawled out on the floor feeling like I was being blamed for something that wasn't my fault, with one million thoughts racing through my head. I sat there trying to formulate a plan that would create the least amount of drama for me. I sat there trying to figure out what my best option was while my PCA got frustrated with me for being upset. I sat there terrified, not only of what it meant for me to be on the floor, but also of what it meant for me to ask for help.
I tried everything I could think of, I exhausted every option, before doing the one thing I didn't want to do. I called the paramedics and they came and helped me get off my floor. The whole time I was terrified about the repercussions of my actions. I was terrified about what it meant for me and for my life outside of this one particular situation. I was afraid of the ripple effect, and my PCA didn't understand that all. She kept telling me that people fall all the time and it really wasn't a big deal. What was hard for her to understand, and what is so often hard for people to understand is that because my circumstances don't look the same as the average person, people often react differently to me than they would to other people.
Falling isalways embarrassing, always awkward, whether or not you're disabled, but when you can't get yourself back up, it becomes so much more than that. When you can't get yourself back up, an awkward, uncomfortable, and embarrassing situation suddenly becomes terrifying. When you can't get yourself back up, what is an every day mishap for everybody else suddenly becomes an opportunity for people to question your competence. I was pretty lucky and everything worked out for the most part, even though I had to explain to 50 different people that I was fine, and all I really needed was help getting off the floor. Having to explain my life and my circumstances to so many people was frustrating, but it was not near as bad as the circumstances I had envisioned in my head.
I am always afraid to ask for help because we live in a society that frames disability in such a way that any time you fall outside of the "super crip" idea of being able to do everything and showing no weaknesses, people have a tendency to question your ability to do anything. Everybody has moments in their life where they need help. Everybody as times where they can't do it on their own, and that's okay. Needing other people is a totally natural part of the human experience, but we as a society have a double standard when it comes to needing help. We normalize some forms of need and don't even recognize them. We allow people to live the life of total and complete independence, even though that doesn't exist, and we say that if you do not fit into that mold you are somehow less than fully human. I live in fear of asking for help, because I have spent my whole life having to prove to people that I can do it. I live in fear of asking for help because people tend to automatically assume I can't do things or make decisions on my own. I live in fear of asking for help because at every corner, I am faced with situations where people question my competence or my adulthood, simply because I can't do things like everybody else.
I go to school over 1000 miles away from my parents; when people find this out their reaction to my parents is almost always the same, "you let her go that far away? Aren't you afraid that something is going to happen to her?" My mom often responds by asking if they would ask her the same questions. If I wasn't disabled. I know my parents were nervous when I first decided to go to school so far away from home, but they were supportive, and are always supportive of my right to make my own decisions and live my own life, even if other people don't agree with them. I will never forget going with my mother during my senior year of high school to a workshop on transition planning for disabled students. We were sitting at a table with two other mothers of disabled teenagers, one of whom was present and one of whom was not. I don't remember how, but at some point the conversation turned to guardianship, and one of the other women asked my mother if she had guardianship of me. My mother replied that she did not, and saw absolutely no reason why she should, I was capable of making my own decisions, of living my own life, and I should have that right. The woman responded by saying what if something happens to her? What would you do then? My mother responded that I had an older sister and something could just as easily happen to her, but nobody thought my parents should get guardianship of her. The woman said that that was different, because my sister wasn't disabled. I was stunned by her response, and I have never forgotten it.
Situations like falling on my dorm room floor scare me not only because they are frightening and uncomfortable at face value, but also because I live in a world where people see my right to autonomy as different simply because I am disabled. I am afraid of situations where I look anything less than totally together and capable because from the time I was four years old and I had to be observed, so that people who didn't even know me could decide whether I was able to go to mainstream kindergarten. I have spent my whole life having to prove that I should have the same rights and opportunities as everybody else. I have this overpowering need not to admit when I need help because I am afraid that I will lose everything I've worked so hard for.
Asking for help, is not, and should never be wrong. Asking for help, is not, and should never be a sign of failure. I am learning, slowly, and with a lot of practice, that asking for help isn't something I should ever be afraid of, but it's a hard lesson to learn. It's a hard lesson to learn, because for most of my life I have learned through experience that if I showed even the slightest hint of not being able to do things or handle things as well or better than everybody else, my life would become more dramatic and complicated than Marissa Cooper on the OC. It's a hard lesson to learn, because in order for it to stick, I'm not the only one that needs to learn it. As a society we need to stop believing the lie that "it's different simply because somebody is disabled." It's not any different. It may look different, and it may manifest itself in different ways, but that doesn't mean that it is inherently more complicated or more extreme. We need to change the way we look at things and remember that everybody needs help sometimes, and we don't look at them as though they are less than human because of it.
Everybody trips, everybody struggles, everybody falls and we don't use that as an opportunity to call their whole life, their whole right to adulthood into question, so why is it okay to do that to me?Why is it different just because I'm disabled?
I tried everything I could think of, I exhausted every option, before doing the one thing I didn't want to do. I called the paramedics and they came and helped me get off my floor. The whole time I was terrified about the repercussions of my actions. I was terrified about what it meant for me and for my life outside of this one particular situation. I was afraid of the ripple effect, and my PCA didn't understand that all. She kept telling me that people fall all the time and it really wasn't a big deal. What was hard for her to understand, and what is so often hard for people to understand is that because my circumstances don't look the same as the average person, people often react differently to me than they would to other people.
Falling isalways embarrassing, always awkward, whether or not you're disabled, but when you can't get yourself back up, it becomes so much more than that. When you can't get yourself back up, an awkward, uncomfortable, and embarrassing situation suddenly becomes terrifying. When you can't get yourself back up, what is an every day mishap for everybody else suddenly becomes an opportunity for people to question your competence. I was pretty lucky and everything worked out for the most part, even though I had to explain to 50 different people that I was fine, and all I really needed was help getting off the floor. Having to explain my life and my circumstances to so many people was frustrating, but it was not near as bad as the circumstances I had envisioned in my head.
I am always afraid to ask for help because we live in a society that frames disability in such a way that any time you fall outside of the "super crip" idea of being able to do everything and showing no weaknesses, people have a tendency to question your ability to do anything. Everybody has moments in their life where they need help. Everybody as times where they can't do it on their own, and that's okay. Needing other people is a totally natural part of the human experience, but we as a society have a double standard when it comes to needing help. We normalize some forms of need and don't even recognize them. We allow people to live the life of total and complete independence, even though that doesn't exist, and we say that if you do not fit into that mold you are somehow less than fully human. I live in fear of asking for help, because I have spent my whole life having to prove to people that I can do it. I live in fear of asking for help because people tend to automatically assume I can't do things or make decisions on my own. I live in fear of asking for help because at every corner, I am faced with situations where people question my competence or my adulthood, simply because I can't do things like everybody else.
I go to school over 1000 miles away from my parents; when people find this out their reaction to my parents is almost always the same, "you let her go that far away? Aren't you afraid that something is going to happen to her?" My mom often responds by asking if they would ask her the same questions. If I wasn't disabled. I know my parents were nervous when I first decided to go to school so far away from home, but they were supportive, and are always supportive of my right to make my own decisions and live my own life, even if other people don't agree with them. I will never forget going with my mother during my senior year of high school to a workshop on transition planning for disabled students. We were sitting at a table with two other mothers of disabled teenagers, one of whom was present and one of whom was not. I don't remember how, but at some point the conversation turned to guardianship, and one of the other women asked my mother if she had guardianship of me. My mother replied that she did not, and saw absolutely no reason why she should, I was capable of making my own decisions, of living my own life, and I should have that right. The woman responded by saying what if something happens to her? What would you do then? My mother responded that I had an older sister and something could just as easily happen to her, but nobody thought my parents should get guardianship of her. The woman said that that was different, because my sister wasn't disabled. I was stunned by her response, and I have never forgotten it.
Situations like falling on my dorm room floor scare me not only because they are frightening and uncomfortable at face value, but also because I live in a world where people see my right to autonomy as different simply because I am disabled. I am afraid of situations where I look anything less than totally together and capable because from the time I was four years old and I had to be observed, so that people who didn't even know me could decide whether I was able to go to mainstream kindergarten. I have spent my whole life having to prove that I should have the same rights and opportunities as everybody else. I have this overpowering need not to admit when I need help because I am afraid that I will lose everything I've worked so hard for.
Asking for help, is not, and should never be wrong. Asking for help, is not, and should never be a sign of failure. I am learning, slowly, and with a lot of practice, that asking for help isn't something I should ever be afraid of, but it's a hard lesson to learn. It's a hard lesson to learn, because for most of my life I have learned through experience that if I showed even the slightest hint of not being able to do things or handle things as well or better than everybody else, my life would become more dramatic and complicated than Marissa Cooper on the OC. It's a hard lesson to learn, because in order for it to stick, I'm not the only one that needs to learn it. As a society we need to stop believing the lie that "it's different simply because somebody is disabled." It's not any different. It may look different, and it may manifest itself in different ways, but that doesn't mean that it is inherently more complicated or more extreme. We need to change the way we look at things and remember that everybody needs help sometimes, and we don't look at them as though they are less than human because of it.
Everybody trips, everybody struggles, everybody falls and we don't use that as an opportunity to call their whole life, their whole right to adulthood into question, so why is it okay to do that to me?Why is it different just because I'm disabled?