My Turn: Defining Normal When You're Disabled

There is never going to be a day when I wake up, get out of bed and forget that I have a physical disability. As soon as I open my eyes, I am immediately reminded by the sharp pains that run from my lower back and down into my legs. After a few moments, I get myself out of bed and continue on with my day. I have a rare disease called arthrogryposis. Many people confuse it with multiple sclerosis or spina bifida, but it is not related to those two in any way. Arthrogryposis occurs in the womb, and there is no known cause.

When I was born, the specialists said I was an exceptionally lucky boy because my case was mild. Many babies with arthrogryposis are born with no limbs, severely deformed limbs or are permanently wheelchair-bound. Luckily, I am able to walk. I only have abnormal knee growth, dislocated hips and tightness in my joints and muscles from my hips all the way down to my feet. The tension is much like arthritis—I can be in pain at any time for no apparent cause. I use a wheelchair to move around any vicinity that requires any long-distance walking. The wheelchair gives me my freedom to move without being tired and in extreme discomfort.

Sometimes it's an internal battle when I'm unhappy about not being able to walk normally or participate in certain sports or just live a life without requiring some sort of aid. But I manage to put on a strong attitude, accept myself for who I am and move on. Other times my day will come crashing down when I least expect it. I am simply minding my own business, and I turn around to find a finger practically pointing in my face. And when one person points at me, everyone ends up staring. I become the odd one out of the bunch; the only person out of hundreds who is sitting in a chair with wheels.

I have one question on days like those: why does the fact that I am sitting down in a contraption that moves me around when my legs are unable to do the job make me so different? I was born into this world with just as much brainpower, just as much knowledge and just as much capability as every other "normal" person.

During my freshman year of high school, I was awarded the "Student of the Year" award from the Mayor's Committee for Student with Disabilities. I graduated in June 2005. Approximately two weeks after that, I found out that I was one of the eight pupils selected to receive a six-year full scholarship to attend Arizona State University. My tuition is paid for up to six years of attendance including all books and miscellaneous fees. I also collect an additional amount per year for a living allowance. Do those seem like the accomplishments of someone who is "abnormal"?

I pray to God to allow people to be more open-minded. I pray to help them to think just a little bit before they decide to point at someone because they look a little different, or walk a certain way. People should think of the physically disabled as regular everyday people, and treat us like that, too.

After experiencing what I have throughout my life, I have made peace with my disability. I know I am not an abnormal human being. I am just simply more unique, and this is how I live my life.