Recently I sat down with my physically disabled friend, Todd, to hear what he had to say about his life. Todd and I get together every Thanksgiving, so I was eager to get an update.
I have reshaped Todd's words to put them in story form. Here is Todd's story:
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I know what people think when they see me for the first time--he's severely disabled. He doesn't have arms. He's not a tall man, and once more, he's confined to a wheelchair. What kind of life is that?
I'm sure their thoughts do not stop there. Other thoughts may be, "How does he do it? How does he eat, bathe, scratch himself, answer the phone, blow his nose, go to the bathroom?" If I was an able bodied man and saw my wheelchair-bound self in the street, I'd probably ask the same questions.
I have to tell you that I am not put off by people thinking these things.
Most people want to know why I don't have arms. When I tell them I'm from Middletown, Pennsylvania, the area around Three Mile Island, many immediately think of the big nuclear accident there, and they surmise that this might have caused my disability. But no, that's not true. I was born before the nuclear accident at Three Mile Island.
Some people will ask me if my mother took Thalidomide, a drug that was given to women by doctors in the early 1960s. But my mother never took Thalidomide; at least that's what she always told me, unless she's telling a major fib. I know my mother is being truthful. As far as I can tell, I am the way I am because of genetic factors although as far as I know nobody else in my family was born this way. Perhaps if I traced my family history back 200 years, I might find somebody who was, but I won't be doing that much research any time soon.
So, yes, I have a number of disabilities. Looking at the bright side, I can honestly say that at least I was not born able bodied and had to deal with an accident that made me disabled. Then I would have had the memory of a tragic loss, the loss of my arms, but since I was never able-bodied, I don't know what it is like to have arms, or even to be tall, or to scratch myself with hands or dial a phone without using my feet.
I can be thankful for that!
My feet, you see, are my arms. They are my hands. I use them to type, to eat, to point, to open mail, to pet my cat Leo, to work the remote control for my TV.
One more thing, people think that because I am disabled, I don't work but rather collect disability checks while watching TV all day, but that's not the case at all. I am a full time Data Entry Clerk at Verizon in Center City Philadelphia, and I've had that job for over 21 years. I'm proud that I was able to find and keep a job like this, although just because I'm handicapped doesn't mean that I have to be satisfied with the boring duties of a Data Entry Clerk. While I love getting up early and getting ready to leave the house, I don't always love the fact that my job is among the world's most boring jobs.
Just because I am handicapped doesn't mean that I have to settle for a job that doesn't satisfy me. Of course, in this economy, many people work jobs they are not in love with. I guess that's why they call it work. If you can't get what you want, you get what you need. My data entry clerk job did satisfy me for a number of years, and though that has changed in my department at work I am on record as being the 3rd most productive employee. There are some months when I register in at number one. There are 18 people in my department. There used to be 32 but because of downsizing many of my co-workers took early retirement packages, and so now there are a lot of empty desk around me.
There was a time when nobody could get me to say that I am a lot like my mother. To me for many years those were fighting words. But when you allow yourself to grow in life sometimes the truth becomes more than obvious: The fact is. I am a lot like my mother.
I am thankful that I can finally accept the truth!
When my parents went to enroll me in elementary school, the administrators said that would not work because the school was not wheel chair accessible. Those were the years when institutions could say things like that because most buildings were not wheelchair accessible. "He'll have to be bussed to another school district," they said, and my mother took a fit.
She had a monstrous fit. She yelled and screamed until they couldn't take it anymore, and guess what? They made the elementary school wheelchair accessible. My mother did this because she was not afraid to speak up.
You might want to know when I first became aware of the challenges I had to face in life. It didn't start at home, really, but when I would go out to shopping malls with family and friends. People would stare at me. I don't mean quick, polite stares but the long drawn out kind that can stick like glue. The stares didn't bother me so much, but they bothered the people who happened to be with me. A big change I have noticed over the years is that generally people don't stare at me that much anymore. I really attribute this to the increased awareness and visibility of disabled people in society.
For that I am thankful!
I feel very good about this change, though I must confess I used to be bothered by the questions and prolonged stares of little children. Now children are naturally curious beings, and they want to know why something is the way it is, and so over time I began to relax around them and comfortably answer their questions about my disability. But then I found that it was the parents who would draw the children back and tell them, "Don't ask him that. Don't be rude. Come here," which in the end I think is the worse thing a parent can do.
A lot of times I will tell a parent, "Let the kid ask, it is really okay. They should know. How else are they going to know? Let them hear it from me."
Throughout much of my life I've had to pretend to be happy, to put on a happy face for people. This is true until I get to know someone, at which point I will let my guard down and show them that I have different moods just like everyone else. Many people meeting me for the first time will say, "My God, he is always in a good mood. Given the position he's in, he's always in a good mood." Of course, anyone who knows me knows I am not always in a good mood.
The biggest thing about my disability is that I don't want people to feel sorry for me. As a teenager I felt sorry for myself, but that feeling had more to do with how women treated me. Since I have been without arms since birth, I didn't see this treatment as happening because I was necessarily disabled, although some of it may have been connected to that. At the time I felt it was because of my acne. You see, since I was born this way, I don't know any other way, so had my parents kept me in a locked room away from able bodied people, I would never know that I was...disabled. A lot of my insecurity in high school had to with acne....I had the kind of acne nobody should ever get...the kind of acne that is almost impossible to get rid of with over the counter crèmes and ointments. I don't think I started to look good until my twenties...that's when the acne cleared up. Of course, being a teenager even for able bodied people can be a very difficult time. Hormones are racing, the body is changing, and emotions are mixed and confused. It's not an easy time for anybody. So for me accepting the fact that girls didn't find me attractive--not even one girl--was very hard to accept.
That all changed for the better in my twenties, and it changed even more as time went on when I'd eventually get a girlfriend. My teenage years taught me a lot about peoples' reactions to me. One thing I learned is that when both men and women are over attentive or fussing over me excessively, this is a red flag. Too much fuss in my mind translates to "I feel so sorry for you." Conversely, when people are visibly nervous around me I take this as a good sign because I know that I will eventually win them over by being cheerful and happy. And after I win them over they often become my best friends.
And when they become my friends, I no longer have to pretend to always be cheerful, I can be myself. You might say I have a talent for acting. Well, I do, but I also really like people. I really value my independence, as I've stated. I cannot say this often enough.
When I finished high school, I knew I had to figure out what I wanted to do with my life, the kind of job I would get. My goal was to go to a big city, live in my own apartment, make friends, and have a regular job. I wanted to go to a trade school, and eventually I applied and was accepted at a school in Philadelphia. Now, while my parents wanted me to be independent, being that independent scared them. Philadelphia, in their minds, and in the minds of most rural people, is a hornet's nest. They were worried about crime and about my safety. But to tell you the truth, I did not want to live in a rural environment. The city to me has always been exciting, because in the city you can go out and get coffee at 3 in the morning if that's what you want to do.
There are also many more people to meet in the city than there are in isolated rural areas.
When I enrolled as a student, I found a place to live in University City. Later I moved to an apartment in Roxborough, which was fine for a while although I have to tell you that I did too much drinking in Roxborough. I had to learn the hard way, I suppose, and so there were many odd DUI style wheelchair accidents. These were mostly sloppy minor accidents that made me look and feel foolish. I later decided that I had to become sober. (I have been sober for over a decade now).
For that I am thankful!
A lot of my life has been spent on the road...not as a traveler to exotic places, but as a wheelchair driver. Driving through the streets of the city is not always easy. In fact, I have had many, many, near misses with cars, so many in fact that I had to figure out how to get to and from my place of work from my Center City apartment. So I devised a way to get to work via the subway concourse and as a result I more than cut in half the number of car-wheelchair near misses.
I'll never forget my first wheelchair-car near miss. It was in University City near the Penn campus, and I was headed out to the school cafeteria to get some food to bring back to the apartment, when a woman in a car clipped my wheelchair. She got out of the car and began to cry. She couldn't apologize enough, she was really upset, but my mind was only on the food, and so I told her, "It's okay Miss, it is okay." I eventually claimed her down and was able to get my food.
Another time in Center City a male driver almost hit me. He was so apologetic he handed me a twenty dollar bill. Now, I really don't like it when people just hand me money, but in this case I took it. But there have been times when people have just come up to me and handed me money, as if in their minds a disabled person in a wheelchair equals a homeless person in desperate straits. I'm proud to say that I have never accepted money under these circumstances.
Even though I am disabled and going through some pretty scary health problems right now---I have polycystic kidney disease and will need a liver transplant before too long---my parents would not be happy if I threw in the towel and gave up, quit my job and asked them to move home. I would never do that. I consider an action like that falling victim to loser status: a man in his forties living at home with his parents. It's certainly not something my mother would respect, and since I am like my mother, I wouldn't respect myself either. My big personal goal is to meet the right woman and get married and have a family. That's what I really want, and I know I couldn't do that if I became a dependent invalid.
Talking about marriage brings me back to women again. I met my first girlfriend when I was 23. I was in a bar with friends, and they happened to notice a beautiful girl looking at me. It was phenomenal to see that a woman was looking at me because she was attracted to me, rather than because she thought I was a freak. So we became boyfriend and girlfriend for a while but then like a lot of love stories when you're young, the whole thing took a nose dive when she started giving her business card to men while we were out on dates.
Today my life is good in terms of peace and comfort. I love going to work everyday even if I am not in love with my job. I've accepted the fact that living in Center City is lonely. In Center City people tend to say hello how are you, and that's it; friendships are not easily formed as they seem to be formed in neighborhood settings. But feeling lonely has to do with the fact that I no longer drink and go to bars. Meeting people in bars is a big chunk of what happens in the city. So I've learned to trade an exciting life with huge ups and downs for a more solid and quiet life with a secure center.
Yes, for all of these things I am extremely grateful!