Thursday, September 24, 2009

September 2009

Having graduated with a degree in Creative Writing in May of this year, I have found myself thrown out into the “real world” diligently searching for a job alongside my able bodied peers. Even though I have made many strides toward being a meaningful member of society, it hasn’t been easy feeling useful throughout my disabled life. It’s tough having any disability, visible or not, in a world that’s not accommodating to these differences. I have grown up watching my sister and my friends hold down jobs, get their licenses, and do all the other things that “normal” people do. It seemed like I would never be on track with everyone else.

All of this has changed though, because I landed a great job that I am very proud to have. Not long ago, I sat at the kitchen table and searched the papers highlighting and circling all of the jobs that I ought to apply for. Eventually I came across an ad at the Vermont Center for Independent Living; they were looking for a Home Access Program Specialist. After the first interview I knew that this was exactly where I was meant to be, I completely related to the people I would be working with and the people I would be helping. I thought that having a disability would hurt my chances of being picked for a job, but at VCIL most of the staff is disabled. Our mission is to help people who are disabled lead independent lives with a sense of dignity, a truly worthwhile way to spend my time.

There haven’t been that many things that I have been truly passionate about but my job is one of them. In the Home Access Program, for example, we help people fund and build the modifications they need in there homes in order to live more independently. We help both the disabled as well as elderly people who are in danger of going into a nursing home.

One of the best things that has happened to me since I took this job is in a black binder that sits on my desk with the words ORIENTATION PACKET written on bright pink paper. This information informed me of the history of the Centers for Independent Living (CILs), as well as a history of the way society has viewed disabled people throughout the ages. The fight that people with disabilities have had to face in order to get the same rights as able bodied people is outrageous. I just could not believe any of the awful things that I read from that packet, it is the reason why I love what I do. If you ever get around to it, you ought to pick up The Music Within because it is a great movie depicting the struggle towards obtaining rights for people with disabilities.

I know that this job has absolutely nothing to do with my major at all, but it is by far one of the best jobs I have ever had! I feel great knowing that what I do really does make a difference in people’s lives and this job makes a difference in mine too. All those years of feeling useless have finally come to an end; it is so good to feel needed!

Monday, April 6, 2009

April 2009

A few weeks ago, I found myself home alone on a snowy Sunday afternoon. I do not mind being home alone, but this particular occasion marked the first time that nobody has been around to help me get a sliver out of my finger! I contemplated leaving it until someone got home, but the sucker hurt just so much! I looked at the thing and decided what the heck, I can get a sliver out of my hand! Why not?! I had never thought it possible to remove a sliver from ones finger with the hand in which the sliver dwells, but I guess that, in the end, I underestimated my own abilities! I thought at first that maybe I could use my teeth because this method has proven quite effective, but it was too far in and so I said to myself, “Well Alaina, you ought to get your tweezers.” Being disabled, I am rather used to having to accommodate things for myself, but this was one area that I had not attempted before. I was never in a position where I would have to and it had never crossed my mind that one day I might find myself in such a predicament. So I grabbed my tweezers and thought for a minute. Before I was going to attempt such a thing, I had to engage in a little bit of strategic planning. I decided that my biggest challenge was the positioning of the tweezers in my fingers, because the sliver was in my pointer finger and thus it was up to my thumb and middle finger to get the thing out. I had to hold it just right, and believe me it took a rather long time. In the end though, I succeeded in removing that dang sliver, and in the process I guess I mastered a task that probably will be put to good use from now on!

Friday, March 6, 2009

March 2009

Living with a disability can be hard to do in a school setting, not only in social aspects, but also in the classroom. Growing up in the school system, I found many accommodations that served me well and passing on this information is what I am here to do.
Elementary School
It’s hard for me to think back all the way to when I was in elementary school, but I can recall a few things that served me well. I remember graph paper with relatively large grids being a necessity. When I would try out my skills at addition or subtraction, I would always get the wrong answer because I had a hard time lining up my numbers. When my teacher would pass out the problems that we had to do, she would give me graph paper instead of printer paper. I also had an aid who pretty much followed me everywhere, and everyday she would fill up my water bottle before I got there and put it on my desk. For some reason, after my surgery I have never been one to drink much. I used to go to the nurse all the time because of headaches, probably because I didn’t drink enough! Of course my aid did other things too, like work one on one with me in reading and stuff. I also used to ride the mini bus, which was important since I wasn’t well enough to walk myself home or go on the regular bus. I think it made me feel a little better too because I didn’t have to worry about a bus full of other kids and also I got to sit in an actual seat that had a seat belt and was easy to get into. I think that middle school was made easier by the fact that the teacher hung on to all of our papers and we didn’t need to carry books and stuff. This all changed in middle school though.
Middle School
When I got to middle school I had a lot of new things to contend with. I needed to carry binders, and I had a locker and an assignment book. It was at this time when my accommodations really became important. It was crucial that I had a locker that was located in a good spot - in terms of the need for it to be on the top row and on the correct side of the hallway. Due to my vision loss, it was important that I be able to see people when there was a big crowd. This is why, about a week before school started, I was able to go and pick my locker out first. I then marked it with my lock and I didn’t have to worry about my locker. Of course, I had to practice very hard in using a combination lock so I bought one many, many weeks in advance. It can be tough to hold a lock steady and spin the dial AND memorize the numbers. I practiced A LOT at home. It was also at this time (I think) when the policy was set in place that I would be told beforehand about fire drills, that way I could leave early with my aid. Not only do I absolutely hate loud noises, but I also didn’t get trampled by people who were racing to get out. Because we had to change classes, I was also allowed to use the elevator (which was a big deal because it could only be used if a person had the key). I became quite popular really, because every time I needed to go downstairs, at least a few people would be waiting to hitch a ride. When I was in sixth grade I discovered that having a big squishy grip around my pencil was rather helpful and that using a clipboard to keep my papers in place was a good idea. The clipboard was held in place by dycem I believe. When I was in seventh or eighth grade the school got me a one handed keyboard, and I just could not believe how much easier my computer class became. Even to this day I wish that I could have taken it with me because it was half the size of a regular keyboard and was completely flat. That is one of the best things that I have discovered. Man, how I miss that keyboard! I seem to have discovered a lot of great accommodations in middle school, because many of them transferred to my high school years. For example, when I would take tests I would not get good grades sometimes because I would not write all the information that was asked. This was because, only being able to use one hand, I would simply get tired from writing! This is why the use of a scribe became very important. Someone would be available when I had to take a test and I would dictate what I wanted to say. Also, because this took a bit longer, I was allotted extra time to take all of my tests. Even though I had a scribe, sometimes on quizzes I didn’t and I would sometimes skip a question because I did not see it! This was a problem, so (if the teacher saw that I missed a question) then they would ask me, and if I knew then - I knew, and if I didn’t - that’s why I skipped it! This policy was set in place to make sure that I did not get marked down because I didn’t see the question.
I hope that at least a few of my tricks you find useful! If there are specific things you would like to ask me feel free!

Tuesday, January 6, 2009

January 2009

I had thought, it being January and the middle of winter, that perhaps it would be of great use to share all of the things I have picked up in the past fourteen winters since my surgery that have helped me survive the cold and ice. This perhaps I will do in the future, but lately I have been feeling that I should be a bit more personal, and share some of my own experiences with the challenges of having had a hemispherectomy. This particular story is of something that happened to me when I was all alone, but it means a lot to me. I actually wrote about this incident for one of my workshops at school, and so it has been at the forefront of my mind for a few months. I thought that maybe I should include it here. I am not sure if it will mean anything to anyone except me, but I am willing to share a piece of it.
Even though I have permanently lost the ability to run, I have found myself with the urge to do so many times. Despite the fact that it has been over a decade since I have had the ability to run, these urges have been around for quite a few years, I first noticed them when I was in high school. Often they come on suddenly, usually when I am preoccupied with other things. All of a sudden I will want wholly to do the thing that I can not do! Regardless of how many people I have asked to teach me, no one will help me learn to run again. That is why when ever the opportunity presents itself, I try to teach myself to do exactly that. A few years ago, I found myself sitting in my dorm room at Norwich University with the overwhelming urge to run again. I sat at my computer trying to picture myself jogging on the side of the road like I saw people doing sometimes; I wondered what it would be like. Because Norwich is a military school, there were always people around me running either on campus, around the indoor track, or all through the town. One Sunday in March, I decided that I would try running. It was the Sunday before classes started, most people had not returned to campus from Spring Break. Because I live so close to the school, I returned quite early, and I saw this as the perfect opportunity to find myself at the indoor track. Nobody was there except me, so I did not have to be embarrassed. I am quite self conscious about the way that I walk, so I could only imagine how I looked attempting to run. I found the most exhilarating song on my MP3 player and turned up the volume. At first all I did was stand there. I looked around the track and tried to picture myself. I so diligently concentrated on the image of myself running (without limping) that I could almost see myself doing so on the other side of the track. With that image in my head I got my legs started. The pace was slow at first, but eventually I found a steady speed. I kept the image of myself in mind, learning to ignore the thudding that was caused by my brace, and “flew” up one side of the track. I tried to remember the track meet I went to when I was in high school, in order to cheer on my sister. At that meet there was a runner for one of the other teams who was disabled. He had perhaps Downs syndrome, and even though he was the last one to finish, everyone was cheering him on! I pictured the moment when he finished and handed off the baton—he looked so proud of himself! I thought that maybe I could take on his confidence, and I pictured a crowd cheering for me. He also had a kind of “limp”, but he didn’t seem to care! Picturing the smile on his face made me excited that I was giving this running thing a try. Because the track was meant for both walkers and runners, the corners were especially tricky to get around. They were not completely flat in some spots, so I decided that to be safe, I would only run until I reached one of the corners. In these places I would walk, but then proceed up the other side of the track. After I finished running down the other side of the track, I stopped to acknowledge what I had done. I completed one lap! I decided that in celebration of my accomplishment, I would dance around for awhile. Because the track was up near the ceiling, with the basketball court beneath it, I decided to pretend that I was on a boat. I reached over the edge singing the song from Titanic and being my silly self. I pranced around laughing and pretending that the boat was sinking, and saying “O jack! I’ll never let go!” in my most dramatic voice. No one was there, I could act however I wanted to! No sooner did I think about the fact that I was all alone up there, when a cadet had joined me on the track. I was so excited and happy to have “run” a lap around the track for the first time since my brain surgery that I didn’t care! I hadn’t the desire to do anymore running, I had satisfied the urge that brought be there in the first place. I just wanted to leave and tell everyone! I was so happy I felt like proclaiming LOOK WHAT I DID!!!!!!!!!!!!!!!!

Saturday, November 1, 2008

November 2008

It is Thanksgiving time again, which is an extra special time for me personally. It was fourteen years ago at about this time that I underwent my hemispherectomy. It’s hard to believe that it has been so long, but I have discovered a lot of handy gadgets and tricks to help me out in life, and I would be honored to share with everyone!

There are a lot of things that exist out there that make living with one hand so much easier. One of the best things I have found has got to be dycem, it comes in handy for many things because it holds things still. That way, when I am trying to stir pancake batter (I love pancakes!), the bowl does not go flying across the room and make a big mess! I have also found a one handed can opener that I have had for many many years. It is a Black and Decker cordless can opener. It is easy to use and when it was new it had a magnet on it to lift the lid. Nowadays I believe that they have “hands free” can openers, but I still like my older one.

There are many catalogues in existence that are not meant specifically for adaptive household gear, but they have helpful things in them. For example I was able to find a stand that holds my hair dryer so I can style my hair and also I fond a lotion applier that has a long handle so I can get my back. The most recent gadget I found is one that opens soup containers since the metal tabs are so popular nowadays. I put a piece of dycem between my legs so that the container holds still, and I use my soup opening device to get the cans open. It is a simple tool that basically looks like Captain Hook’s hook, but it has a slit at the end of it. These gadgets are hard to describe, but I would be happy to send pictures or catalogue information to anyone. I hope I helped!