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My name is David Evans. I am twenty-four years old. I suffer from Duchenne’s muscular dystrophy, a severe form of the disease which dramatically reduces life expectancy and is often fatal. I am confined to a wheelchair.

High School, Low Points

I attended Conrad Weiser High School, located in Robesonia, Berks County, Pennsylvania. The first day of high school, I felt overwhelmed by the size of the building. Besides my biology class, I was in Special Education classes. When I had to take a test, I went to what they would call the “resource room.” The Special Education para-educators would sit and read the test questions to you.

I was in a power wheelchair and had to use the two elevators in the building. I had my own key to the both elevators. The teachers would let me leave class early and come to class early. The bell would ring, and then the hallways would be full of students socializing and walking around. I got caught in the halls a few times after the bell rang, and it wasn’t fun. One time a guy walked into me, and his books fell on me, hitting me in the head.

Mean Girls

Being in a wheelchair in high school was not easy. It’s hard to fit in. When I would go down the hall when the bell rang, the students would just ignore me. Some of them would give me dirty looks. The girls would roll their eyes at me or laugh at me. Some of the girls would point and laugh at the other people in wheelchairs and me.

Sometimes the students would block my way, though not always intentionally. I would tell them to move, and eventually, they would. My classmates were not always kind; they just did not want to help me if I needed help, so I had to have a helper with me. I mostly stayed away from the girl students. They were especially cruel. They would say that I had a fat face and that I was ugly. The girls would not look at me half of the time.

Most Conrad Weiser students were self-centered and didn’t care about the feelings of others. I had a friend in a wheelchair who accidentally spilled chocolate milk on a male student. The guy flipped out and said that he was going to punch the kid in the wheelchair in the face. I rolled over to the guy, and I had a talk with him because the kids in wheelchairs had to stick up for one another. This student didn’t take my friend’s disability into consideration at all. After I had talked to him, he walked away.

I did not like lunch time because it was so loud you could not hear yourself think for 45 minutes. There was a table full of girls who were mean to the other students. All I could do was let their hurtful words roll off of me. Nobody wanted to sit with someone in a wheelchair.

For a while, I sat with my friends. One day when I came to lunch, they all walked away to sit at another table without me. They did not let me sit with them. So, I sat at a table all alone for a week or two. I got tired of eating alone, so when I saw some strange-looking kids wearing goth clothing, I wheeled over to them, and asked if I could sit with them. Thankfully, they said yes. Soon, I got to know everyone that sat at the table, and they even took my tray up to the dish washer for me.

Me with some of my friends from high school

Out in the Cold

One cold day in January, I was wheeling up to the front door of the school. Many other students walked right past me, and nobody would hold the door open for me no matter how many times I asked for help. I had to wait 10 minutes in the cold for a teacher to come out and open the door for me. After that day, the school hired a helper to help me out and to hold the doors for me.

I confided in some of the teachers about the students’ behavior. The teachers could not believe how rude the kids were to me. Every day, my helper would put me in a stander machine so that I could exercise while I was in my first class. The Special Education teachers were helpful and kind. Some of the other teachers made me feel like I was mentally slow based on the way they talked. When I had to go to the bathroom or needed help, I would have to go right to the nurse’s office.

I had a class called adaptive gym with other students in wheelchairs. I have limited use of my hands and arms, like many of my classmates in wheelchairs. The teacher had a routine for us to follow every day, but I was too weak to complete many of them. I did not appreciate that, so I began to dismiss the class as a joke and a waste of time. So the teachers let me attend regular gym class with able-bodied students. The gym teacher had us play dodge ball almost every day. Since I’m in a wheelchair, I could not avoid the balls. The other students did not mean to hit me in the head with the ball, but I could not duck. More than once, a stray ball would bounce off the wall and hit me. I’m usually a calm fellow but, that was irritating.

Other than dodgeball, I could not do what everyone else was doing, so I just sat there on the sidelines and watched the other students having fun. It was upsetting, but I refused to let it get to me. Finally, a guidance counselor decided that I could not do much at all in gym class and changed my schedule.

The next day, I met with the school’s physical therapist, who came to our school every other week. Each session with her would last maybe 20 minutes. She would stretch my ankles and then bend and straighten my legs. The physical therapist would stretch my shoulders and hands, and she would talk the whole time.

Stuck

I’ll never forget the time a Civil War re-enactor came to the school. He set up his tent and equipment in the wet grass when he could have set it up on the sidewalk. All of the students went out and stood by the re-enactor. I wheeled into the grass to watch the show. When I tried to wheel away, I couldn’t move. My tires were stuck in the wet, muddy grass. After a few minutes, the teachers noticed that I was stuck, so the re-enactor and two teachers had to push me out of the grass. Then the teachers took the nearby hose and cleaned off my wheels.

Many people will treat anyone who is a little different from them without respect. We need to remember that manners and treating others with respect will get you much further in life than thinking you are above everyone else. Disabled people have thoughts and feelings like any other person. I write this because If kids read my story and realize what it’s like to be disabled, especially as a child, maybe they will treat disabled people with kindness and respect. We’re people too.

Post-Graduation Challenges

As you can imagine, being in a wheelchair can be difficult, especially if you have health complications. People treat you differently. They look at you funny or stare at you because they just don’t understand your situation. I want to say to the people that stare at me, “take a picture it lasts longer.” I never say anything though, because I don’t want to be rude to them in any way, even though they are rude and staring at me.

Another struggle with being in a wheelchair is transportation and taxis. If you depend on public transportation sometimes, you can experience all kinds of issues. Most trains and public transportation are made wheelchair accessible. I am glad to see that all of the BARTA (Berks Area Regional Transportation Authority) buses are wheelchair accessible. But if you are in a wheelchair and you need a taxi, it’s almost impossible. Very few taxis are wheelchair accessible, and sometimes the driver will just drive past you because you are in a wheelchair. I think they should try to make more wheelchair accessible taxis. I guess it all depends on the taxi company if they choose to make their taxis accessible for the disabled or not.

I may be disabled, but I still have the rights that everyone else has.

I care about this world, and I would like to see some significant changes. I am glad the Americans With Disabilities Act protects disabled people from being taken advantage of, and it can be tough to earn a living. The government is trying to crush and take out the middle class. Soon the only people left will be the homeless and the filthy rich, and the middle class will be gone. Some people have two jobs just to have enough money to sustain themselves and their family.

I see how difficult life can be each day I wake up. My life is definitely not easy, and I can barely get through some days.

To me, life is utterly amazing. Waking up each day is a great feeling, you feel fresh and ready for the day’s activities. I am not the most active person. Every now then and again I go out in my backyard and watch my dad go up to the chicken coop on the hill while he brings back some fresh eggs from the chickens. The one chicken is Henrietta, she allows my dad to pet her and hold her. She is a good chicken.

What I have struggled with the most is the health care system. I am often denied coverage for medical equipment; for instance, my current wheelchair is not operational. I’ve had for it six years, and the parts on it are worn out. For example, the controller is broken and is loose. The brakes make a scratching noise and often lock up for no reason at all. Some days it pulls to the left because the right motor is wearing out. The back rest is broken and keeps on leaning back and not supporting my back, so I get a back ache. Sometimes the lights on the controller flicker on and off. I don’t complain that often, but without my wheelchair, I cannot get around. As a result, I am stuck in bed all day, which is not an option for me. I need to be out in my wheelchair every day. I go outside and play with our five dogs.

It’s a shame that you have to appeal the health insurance companies for your medical equipment. We had to battle the health insurance companies for weeks and even months. I will not let the insurance companies, or anybody else beat me. I will not lay down and let them overtake me. My dad and I will do what it takes.

David Evans

 

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