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Editorial Board Members Walk in Four Pairs of Moccasins

We know that understanding the perspectives of others is key to getting along in this very diverse world. From an early age we are advised (especially when we misbehave) to put ourselves in someone else's place. Whenever we've done something we shouldn't have, we're asked "how would you feel?" Our reaction is to try to imagine being someone else and it usually puts us back on a path to self-correction. It allows us to look at our own behavior and to change it for the better. But seeing something from someone else's perspective isn't easy. It takes practice.

Like Sal in Sharon Creech's award winning book, Walk Two Moons, we ought to practice walking in someone else's moccasins more often. In the book, Sal and her grandfather make a game of it but it's a serious game. Together they turn a lot of the difficult experiences they observe other people having into things they can relate to and understand. They start out by playing a sentence completion game. It goes like this.

If I were in Jamie's moccasins when he found out his mother was having a baby with a disability, I would ______________ or if I were in Tiffany's moccasins when she found out about the accident, I would______________. Then Sal and her grandfather move beyond the initial sentence and start talking in paragraphs as if they were Jamie or Tiffany. As they practice walking in someone else's moccasins together they begin to start looking at a lot of things through someone else's perspective. They become less judgmental and more tolerant. They get along better with others and life becomes easier for them.
The editorial board members of Connect-Ability agreed to walk in one of four pairs of moccasins this past August when they met at NYSUT Headquarters to participate in two days of writing workshops. They listened and learned and talked to one another from the different perspectives of four individuals with disabilities. Working in small writing groups, they responded to eight questions about their disabilities. The four sets of moccasins belonged to these four people.
Bill - a 72 year old man with Tourette syndrome who lives in an assisted living apartment. Bill is retired and loves to play chess.
Tim - a 47 year old man who has a traumatic brain injury as a result of a motor cycle accident. He lives with his sister and her husband and works in a local supermarket.
Jason - a 12 year old student with a learning disability. He excels at running.
Sara - a 25 year old woman with an eating disorder. She and her best friend, Jen, have known each other since childhood and have been inseparable since they graduated from college together.

What's it like having a disability? How do you define disability?

Jason: It's easier for people to point out my faults because the world sees me for my disability. Learning and reading takes a lot of time for me and I have developed patience. I take my time and really appreciate learning. I am more disciplined because unlike a lot of people, I have to study. It's not an option for me. I feel angry, frustrated, and jealous sometimes when I think of how easy it is for everyone else. They can just pick up a book and read through the whole thing in two or three sittings. I take hours to get through a chapter. I always feel as if I have to catch up with everyone. My mom says that everyone wants to feel competent and accomplished and that I can only do my best. I feel that I need to show people more of myself than my disability. I need to show people that I am good at other things. That's why I love running and math because I can show my talents and the person behind my disability.

Bill: When I was younger, my disability left me feeling frustrated. Other people thought that I was a big nuisance. I thought the same about my disability. I just wanted to cover it up. If I had things my way, I would never let anyone know that I had Tourette's. I believe that my definition of a disability would've been a big pain in the neck, and leaving me feeling different from everyone else. Nowadays, I'm living in an assisted living facility, surrounded by people with many different life stories and conditions, and I feel more comfortable.

Sara: People ask me all the time what it's like having an eating disorder. I tell them it's terrifying until you are able to accept it and do something about it. For me, that began when a nurse wearing a blue gown peeked her head through the doorway of my hospital room, came in and unbuckled the restraints tied around my arms. She began asking me if I knew today's date and once I realized that about 3 months had passed since 'yesterday,' I knew there was a serious problem. The nurse told me I had almost died of starvation; she was surprised that I didn't even remember being brought in. I guess that nurse defined my disability for me. It was pretty scary.

Tim: My life is completely different from the life I had before my motorcycle accident. Now I use a wheelchair and I'm dependant on my younger sister to help me do simple daily activities such as getting out of bed. For me, having a disability makes me work harder than others.

How does your disability frustrate or challenge you?

Jason: When talking about movies, my friends always say "the book is better!" I have never had that feeling. Reading is a chore for me and I never enjoy it. A friend recommended Harry Potter. I was nervous about admitting I had problems reading so I said I wasn't interested and that I didn't like Harry Potter. Some people think I am stupid, but they just don't understand that I only have trouble with reading and that everyone learns differently.

Bill: I always find it hard to communicate with other people because of my disability. As a child, I never did have many friends; I always assumed that other people would make fun of me because I behaved differently from everyone else. I never had a social life. I wished that I had pushed myself to be more social, to do more things with other people. I'll always regret the things I should've done but didn't do because of my disability; I could've done a lot more. On a day-to-day basis, some of the people I lived with understood me, while others didn't. When I was still in school, I didn't have any accommodations, this limited my opportunities in the working world which led to my self-esteem issues. Now there are laws protecting kids with disabilities and supporting them to be more involved in regular activities with their peers in school and out in the real world. It's different now.

Sara: In the beginning my disability made me feel as though I was a weakling; especially since Jen, my best friend, began to diet with me and worked through it and has a lot to show for it. I'm lucky to be alive because of what I did to my body by not eating. And each time I open a magazine or talk with a friend, all I think of is weight and it makes me uncomfortable.

Tim: Social interactions can end in tears due to my sporadic emotions, which can become very aggravating. Trying to talk about a simple subject like the weather, can create extremely awkward moments for me and the person I am talking to. At first, I felt like I didn't have control over many important parts of my life. Simple things such as my emotions, my legs, and even my job seem to be ruled by my disability instead of me. I used to be assistant manager of a large company, but because of my disability, I was no longer able to continue my work. Leaving a job that I had once loved was emotional and depressing, yet in order to earn a living I decided to get a job at a local grocery store.

How has your disability made you feel different from other people?

Jason: Everyone seems to be so relaxed in class; most of them don't even pay attention. They have freedom. They can play video games all night and they still do well in school. I work so hard, but I am always behind. I always need help and I've known for years that the tortoise never really wins; the hare is always ahead.

Bill: My mannerisms aren't considered normal; I learned that at a young age. When I was a kid, people would tell me right then and there that I was different. My teachers taught me that I was different. They treated me differently from other students. It was assumed that I wasn't as capable and I believed them. I was usually separated from my classmates. They told me that I was merely a distraction in the classroom. It wasn't until recently that I realized that what they told me at that age might not be the truth.

Sara: A lot of people look at me and often times small children will point at me. I know that they are staring at my bones through my thin skin. People think that I am doing this all for attention but they don't understand how bad this hurts me and how troubled I have become. Strangers approach on the streets suggesting that I just eat a ho-ho and gain weight but it's not as easy as that for me and they don't know that; they can't feel it rotting deep in the confines of their malodorous gut, but I can.

Tim: I often feel out of place when I am out in public. People always act as if they pity me and although I appreciate their kindness and empathy, I feel like I've lost some of my dignity. I feel as if people see my disability and not me. Running used to be a huge part of my life and every Sunday, I would run at least four miles with a group of my closest friends. Now I think my friends feel like they can't talk about running in front of me, because I now use a wheelchair and I'm unable to participate in running. I also am reminded of my differences when I see young kids looking at me wondering why I'm in a wheelchair or why I have frequent muscle spasms.

What annoys you most about what people without disabilities think about people with disabilities?

Jason: Everyone feels sorry for me and always offers so much help. It doesn't make me feel better; it makes me feel worse. I want to help others for once. I don't always want to be the person being helped. I love math and I feel so angry when people try to help me with a subject I am very good at. Just because I have dyslexia doesn't mean I need help with absolutely everything. Sometimes when I am asked to read in class I begin to stumble over words and become confused, instead of letting me work out my own problems other students will blurt out the words before I have even begun to try to figure them out. I always feel so annoyed and frustrated by this kind of help. 

Bill: The most annoying thing that I can think of about people without disabilities, and their opinion(s) about people with disabilities would have to be that they believe that we're not worth getting to know. They think that we're just a bunch of people who are stupid, uninteresting annoyances. They don't think much of us.

Sara: It bears repeating that most people don't know anything about eating disorders and offer advice that is silly or hurtful. Some of them, those with a few extra pounds on, even say they wish they were me!

Tim: I hate it when people try too hard to make me feel included; if I want to do or say something I can speak up for myself. Sometimes people act overly sensitive around me as if I'm going to have a break down if one wrong word is said. Sometimes people don't talk to people

who have a disability because they are afraid of doing or saying something offensive. Friends I had before the accident now act as if I'm a different person because of my disability. What they don't realize is that I'm still the same Tim I've always been. And lastly, I hate it when people say I look healthy or good, when clearly I'm not.

Why do some people make fun of people with disabilities?

Jason: I see people smirking and giggling over my troubles with reading, my dyslexia. My teacher says that they are just insecure and nervous about making mistakes themselves. A lot of people are just bullies and will push around and bully anyone, with a disability or not. They always pick on people who seem to have weaknesses and this seems to make them feel better. 

Bill: I'm not exactly certain about that one. Heck, I'm just as guilty for making fun of people myself. Disabilities are different and it's a whole lot easier to crack a joke at someone's expense than to actually take the time to understand the other guy's side of the story. I do know, however, that as long as it's okay to be the brunt of the joke, people with disabilities will never be able to fully achieve total acceptance in the world.

Sara: Many people ridicule others with disabilities simply because they don't understand the person's disability. Other times, less often, people who are uncomfortable with their disability will poke fun of themselves; apparently trying to 'make light of the situation.' Acting that way about your own disability encourages others to demean you as well. It's not that you can't laugh at yourself once in a while but if you only "play the clown" about your disability, you're setting the stage for others to do the same.

Tim: People may laugh at me or make fun of me because I'm an easy target. Sometimes my muscle spasms cause me to knock over things when I'm at work at the grocery store. People also make fun of me because I have random bursts of crying or laughing during inappropriate times. Sometimes children laugh at me when they see my younger sister helping me in and out of the car. The reason why people make fun of me is because they believe I am not "normal".

How have you modified your activities, goals, dreams, and hopes because of your disability?

Jason: I try to make up for my dyslexia through sports. Coaches sometimes tell me I am too competitive, but recently I have developed a love for running. I like being able to run so fast I leave everyone behind. At the end of the race I hope to feel the weight of a gold medal around my neck. Dyslexia has given me the fuel and running has become my main physical activity. I substitute running fast for reading fast. When I won the 800 meter race, one kid said that people always said I was slow, but that now he realizes I am fast at other things.

Bill: When I was younger, I honestly believed that I was doing the best I could with what life had given me or you could call it what life forced on me. In those days, goals, dreams and hopes were way beyond me. I survived and I coped, but I didn't dream. However, looking back at my experience, there is a lot that I wished that I had tried. My life could have been a lot more than simply coping. I could have had hopes and goals.

Sara: I recovered from anorexia nervosa fourteen years ago; I can't imagine what I was ever thinking when I was that young. Unfortunately, the permanent damage my body underwent from months of near-starvation has left me unable to carry a child. I realize that I've lost one of the most important gifts that life offers. But I have modified my dreams and my name is now slowly surfacing on the (so-far 2 year) adoption waiting list.
Tim: After my accident I had to accept that I'd never be able to run again. At first I was depressed that I could no longer exercise the way I wanted to, but I changed my attitude and tried weight lifting. My life long goal was to be the CEO of the company I used to work at, but now that goal is no longer realistic because of my TBI. My new goal is to learn to accept my disability. Although I still suffer from bouts of depression, I am trying to be more optimistic about my situation.

What are some things that you've done that would surprise people who don't have a disability?

Jason: I made a video game that was a spin off of a short story project we were assigned in school. It was really difficult to write the story but my mom rewarded me by encouraging me to create the game and by paying a tutor to help me with the reading part of the game. Everyone was really surprised by the complexity of it. 

Bill: I'm not sure if there is anything that would surprise anyone. I kind of live by routine. The only thing that really comes to mind is me singing in the choir. There I don't have to worry about screwing anything up. You never hear one voice, just the entire choir. However, for someone who's considered himself a wallflower, I guess it's surprising to be standing up there belting out a song.

Sara: Most of my friends were extremely surprised to hear of my nearly fatal disorder; Jen was astonished that I had become anorexic; she almost didn't believe me at first. Jen told me that with my diet journals, filled with Dr. Smith's nutrition info, and with my sincere dedication to living a healthy lifestyle, it should have been near impossible to become ill with anorexia. Many of my friends and family questioned this as well and it's honestly so hard to explain to them that I don't know how it happened. I guess the most surprising thing about my disability is that I have it.

Tim: Although my life seemed like it was over after my accident, I changed my attitude and began to appreciate my accomplishments. Determination that I didn't know I had drove me to start lifting weights for my upper body. I realized my sister and her husband began respecting me more which helped motivate me to lift even more. Eventually I entered a Wheel Chair Warrior competition. Although I didn't win, I felt proud and respected. When people learn I accomplished this with my disability, they act very surprised. Learning to accept my disability, allowed me to accomplish many goals.

Is there anything else you'd like to tell us about yourself or about people with disabilities?

Jason: I may be seen as a loner, however, that does not mean I don't want to be accepted. I know by now that I am different, always looking from the outside in. Having a disability can be lonely but I have grown as a person and I have discovered how to show people the other sides of me.

Bill: I'm not one to speak on behalf of others. All I can do is speak for myself. I'm not afraid to tell people about my disability anymore. At my age, there are a lot more important things to worry about. I don't care if anyone thinks I am odd anymore. I have Tourette's. I'm 72 years old. I can't move as well as I used to. I can't stay up past 9:00 PM anymore. My eyesight is going. I'm pretty much like everyone else my age now.

Sara: I want everyone to know that recovering from anorexia is far more difficult than picking up a ho-ho; it almost cost me my life before I was able to begin recovering. I want all of you to think about me and remember that somehow, in the midst of confused starvation, I honestly thought that my life wasn't worth that ho-ho; and so my friend, remember my story and be aware that you, too, could have a disability that you never thought you'd have.

Tim: Although my life has drastically changed, I now realize that living with a disability is different than many may perceive. There is a misconception that people with a disability have no control over their lives. I have learned that although I have a disability, my disability doesn't totally control me. I could have let my Traumatic Brain Injury ruin my life, but I decided to be optimistic, change my goals, and not let my disability define me.

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