Who am I? I could start this off by saying I am just a normal guy from a normal town. However, most of the people who know me would have to disagree with this assessment. If I could guess, they would say that I am a unique individual in an interesting life situation. I have had amazing life experiences people could only dream of having, and yet I enjoy the everyday things about my life the most.
Why should you care about my life or my situation? Frankly, it does not matter to me what anyone thinks of who I am, and what I do with my life. However, I feel it is important for you, the reader, to understand who I am in order to understand others in similar life situations.
You see, I was born with a degenerative muscle disease known as Spinal Muscular Atrophy (SMA) type III. To most, I simply say I have a form of Muscular Dystrophy, but MD is not the technical diagnosis for my disability. Muscular Dystrophy is an umbrella term for 40+ neuromuscular diseases, one of which is SMA.
To further confuse things, there are specific diseases within the group classified as the Muscular Dystrophies. One is the incredibly common yet often lethal Duchenne Muscular Dystrophy, which is usually present in males and not females. SMA is not one of the Muscular Dystrophies, but it is a form of Muscular Dystrophy. Explaining anything further will get into the discussion of muscles, nerve endings, and anterior horn cells. Often it is much easier to just say I have Muscular Dystrophy and leave it at that.
I was diagnosed with SMA type III at age four. My grandmother noticed I was walking like a mechanical or wind-up doll at age two. Thus began two long years of tests. I was enrolled in swimming for physical therapy and after my diagnosis I was placed in dance classes in the hopes that anything physical would keep my weak muscles from getting any weaker.
I was able to do everything early. I walked early, talked early, crawled early, and sat up early. There were no initial signs that anything was wrong with me. Had the doctors not discovered I had been born without a left hip socket when I was 2 ½ they probably would not have been led to the diagnosis for SMA when I was as young as I was.
Getting the diagnosis was like getting a death sentence for my family. I sort of knew what was going on and it was an incredibly emotional experience. Yet, I was okay. I could walk with a slight limp. I could skip. I could play on the playground at school. I was just a little bit slower, and it took me longer to do things like get up from the floor after circle time.
I remember the first few years I was in school being an incredibly angry time for me. The school tested me and though I was exceptionally bright mentally, they did not want to believe it was true. The tests had to be lying because back in the 1980s if you had a muscle disease you probably were mentally slow, as well.
From the moment I entered the public education system, I had to fight for my rights. The teachers either went out of their way to make the classroom productive despite my special physical needs or tried to deny I had any special needs at all. The latter would punish me for being slow when walking down the hall and having to get out of class for physical therapy once a week.
The kids noticed my limp and it was common to hear the chants of, duck, duck, duck, as I walked down the hall. That is what they called me because my limp resembled a duck’s waddle. I would try to ignore it or say something witty to deflect from the situation, but in truth, I remember feeling very sad. I kept asking, “Why can’t I be normal?”
At ten, I started taking voice lessons. By this point, I was in advanced classes and had tested into the gifted group at school. It was very satisfying to do so because I had been told I was not intelligent and possibly mentally retarded by more than one school employee. I think this made me work even harder to prove how smart I was.
From 10 until 15, I spent my days partly at school and partly touring my state as a representative for a major disability organization. My afternoons and evenings were spent taking acting and singing lessons and classes. I had a natural charm that won people over. I think this is why I represented both my local area and the entire state of Ohio as their ambassador for the disability organization. I was quite profitable to them.
I must admit I loved the attention though. I was a natural performer. I was on the radio both speaking and singing hundreds of times. I sang and spoke on television, did photo shoots, had a chance to model for a local company, and did television spot ads. It was the dream of a lifetime, and something that helped me grow and become comfortable in front of a camera.
Ten days before my 16th birthday I was wheeled into the operating room to begin the first of 16 hours worth of surgery. I had spinal fusion surgery done to prevent my organs from crushing one another. Had I not had the surgery I only had about 10 years left to live. The surgery was harsh. I faced many complications and almost died. When I came out of all of it, I could no longer stand up on my own or walk.
My recovery did not stop me from wishing to attain my goals as a performer. Despite my vocal cord getting nicked by the tube down my throat during my hospital stay, I managed to re-train my damaged voice again and by the time I entered college, I sounded better then ever could be expected.
College meant that I would perform in a few different theatrical shows, train with an amazing voice teacher, and star in an independent film. I also made a lot of friends. These were the first group of people who looked at me for my abilities, not the chair I sat in every day.
This was around the time I started dating my long-time girlfriend, Ashtyn. She opened my eyes to a whole new world of love and hope, because she really did not care about my bum muscles. She helped to restore all the self-confidence I had lost during my high school years. Today, we have been together five years; have one child, and a happy, well-adjusted home.
So, why am I telling you about my life? I really want to stress how normal my life is to you. I want you to see I have accomplished things despite being in a wheelchair. I want you to understand that I have tried not to let the chair dictate my life. In fact, the chair is perhaps one of the secondary aspects of who I am. I am not ashamed to be in a wheelchair and must admit I have a bit of a hot racing hand.
Why am I telling you this? My purpose in telling you about myself is to let you see that many of us who suffer from debilitating physical conditions are just like you in the everyday sort of ways. I fell in love, as many of you have in the past. In my free time, I love to watch television, movies, play video games, play and watch sports, and spend time with my family. Those are things I have heard plenty of able-bodied individuals say they do in their free time, as well.
One of the biggest causes of discrimination towards the disabled is ignorance. People are ignorant about the ways of the disabled. We are not all the same and cannot be lumped into one category. That does not mean we should be treated as though we are sub-human, because in essence we are normal in all the ways that count.
For instance, my best friend from high school had Duchenne Muscular Dystrophy. He also had an unrelated learning disability and was in special education classes. I, on the other hand, have always been in honor classes. However, outside of school, we were two kids who raced around town causing havoc and getting into trouble like any other set of kids might do.
The one thing the disabled share in common is the desire to be understood. Do not look at the wheelchair as a significant part of our personality. It is not. It is merely a necessary extension of our physical being. Consider, if you will, the wheelchair as our legs in a different shape than your legs.
However, you cannot deny or ignore the disability completely. I think those who try to ignore it the most actually are the most misguided. You can acknowledge the chair. Hell, ask questions if you like, but do not make it the primary focus of every discussion.
It is natural for people to be curious. So, I have a major problem when a child comes up to ask a question or points out my wheelchair and their parent stifles their questioning, while shooting an embarrassed look in my direction. It is good they are curious. Intelligence breeds tolerance, and when a parent stifles their child they are making them ignorant or fearful of people in wheelchairs.
Steps towards Tolerance: I have decided to come up with a list of steps you can implement when meeting and socializing with people that are disabled or impaired. I truly believe your best tool for not acting like a wheelchair discriminator is knowledge. Hopefully, these steps will give you all the tools you need to help spread the tolerance those of us in wheelchairs so desperately seek.
Step #1 – It is okay to ask questions as long as it is done so respectfully. Do not act as if it is such a big deal because we will laugh at you. There is nothing funnier than someone who wants to ask, but cannot stand up for themselves enough to get up the courage to do so. There really are stupid questions though, and most disabled people do not appreciate them.
For instance, I have been asked if my “thingy works”. Yes, we are talking about my private region. Of course, after I ran the person over in my wheelchair (I am kidding!), I asked if their thingy worked, as well. A better way to ask would be, 'What are your limitations?' Can you have a normal, healthy sex life?
Of course, I am not sure why most people care about this, but it seems to be a major question I get asked. Answers are going to vary based on why the person is in a wheelchair. A person with a spinal injury may not be able to feel beneath their waist so their answer is going to differ from someone such as myself who has complete sensation everywhere.
Other stupid questions I have been asked in the past are:
So crippled, what happened? (My reply: I could ask the same of you.)
I am touching your leg. Can you feel it? (My reply: Do I know you?)
You cannot stand up or walk, can you? (My reply: No, I am just riding around in the wheelchair for shits and giggles.)
I am sure you understand my point. Ask questions, but think before you ask them. Imagine how you would feel if you were in the shoes of the disabled person. Would you be offended if you were asked those questions? If you would be offended, then do not ask them!
Step #2 – Try to see past the disability. Ultimately, people with disabilities can make excellent friends. Ask about their interests. What do they like to do in their free time? If you would ask these things of your able-bodied friends then do not hesitate to ask the same of your disabled friends. Their answers might surprise you.
Try to include them when you go out with your other friends. I know transportation can sometimes be an issue, but just being asked to hang out is one of the best feelings. A lot of people assume you do not get out much. Truth be told, in college, I was quite the party animal. I was lucky to get in from the clubs at 4 am with my friends!
Step #3 – Educate others around you. If you hear someone being discriminatory, point it out. Do not be afraid to tell them how they sound. In truth, many people do not realize they are being discriminatory until it is pointed out to them. The more we spread the knowledge of discrimination and intolerance the better chance the entire disabled community has of being understood and accepted.
Step #4 – Do not be shy! Feel free to say hello. Do not be afraid to ask if we need help if you see us struggling up a hill or in a supermarket. Some of us are incredibly independent and as a result, we will politely decline. However, some of us do need help and appreciate the offer more than you realize.
By the same token, do not just come up and help without asking. The independent disabled individuals will be offended. It is best to ask first. You would not walk up to a stranger who could walk and start helping them without asking. You are liable to get maced! You would ask first, so please use the same courtesy when asking us if we need help.
Note: Unfortunately, in every community we do have some bad seeds. In general, most disabled people appreciate the offer of help whether needed or not. On occasion, someone may give you the look of death and act as though you have asked to cut off a limb of theirs. This is not most of us, so please do not think we all act this way!
In truth, we do not want your pity, your prayers, your good wishes, or your blessings unless we ask for them. We just want your friendship. So, next time you see a person in a wheelchair why not say hi, ask their interests, and get to know them. Chances are, you will not be disappointed and will make a new friend in the process.Powered by Sidelines