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The Special Issue

My War

Since my debut in the world 48 years ago, spasticity and involuntary movements due to cerebral palsy have been the dictators of my body.

by Paul Remy
01 December 2002, 12:00am

Since my debut in the world 48 years ago, spasticity and involuntary movements due to cerebral palsy have been the dictators of my body. These twin Saddams constantly fight for control of my legs, arms, and throat muscles, creating a never-ending battle that forbids me from walking, properly using my hands, and talking clearly. Muscles in my left arm can become so tight that I can’t extend or bend it at all, while at other times it moves wildly in the air. My right arm never completely defected to the other side, but it refuses to feed me and help me perform daily tasks. Despite this, I’ve been living in my own apartment for the past 14 years with the assistance of personal care attendants, who come in for several hours at a time throughout the day.

Depending upon how much control the evildoers in my brain have over me at any given time, I can type between two and five words a minute using a pointer attached to a helmet on my head. There are times when spasms invade my neck muscles, causing jerky movements that prevent me from striking keys. I guess entering a speed-typing contest is out of the question. However, my pointer has helped me accomplish many things in life, such as getting my college degree. It is now allowing me to pursue a career as a freelance writer. Sometimes frustration and sadness consume me—it takes a week or two of poking keys to produce a single article, and I cannot financially support myself at that pace. Therefore, I’m forced to survive on welfare. I wouldn’t consider myself disabled if I could type 60—90 words a minute, but I can’t escape the grip that prohibits me from accomplishing this feat. Regardless of this, I get paid handsomely in other ways—knowing that I am well-respected for my hard work and, more importantly, believing that my articles might help others understand.

Meeting new acquaintances can be difficult. Some automatically assume that I’m mentally retarded because I use a wheelchair and have speech impairment. When people have this impression of me, I get frustrated, wanting so desperately to tell them I’m just as intelligent (if not more so) than they are. I do sometimes win battles in this area: While in college I took a course in political science, and at first the professor wouldn’t pay any attention to me. Perhaps he thought I didn’t have the IQ required for his class. During one session, however, I presented him with a piece of paper containing questions, which I had typed the night before, pertaining to his previous lecture. After reading and answering them, he became convinced that I fully understood the material. He ended up giving me a B+ for the course.

My disability doesn’t stop me from fully enjoying life. I’ve even gone windsurfing and horseback-riding using adaptive equipment. Several years ago, a friend invited me to Oregon to go skiing, and I had a hell of a lot of fun. Many times in my life people have told me I can’t do this or that because of my physical limitations—some believe that the disabled can’t accept failure, and want to protect us from it. But I’m not afraid of getting hurt once in a while. Failure is a part of life and being overprotected is far worse than having a disability.

Everyone wants to believe that people with physical disabilities are asexual. I can tell you that this is idiotic thinking, because I am a full-fledged sexual being. It outrages me when some nondisabled person attempts to persuade the disabled not to develop relationships, thinking we’re unable to handle the ones that go wrong. I can vividly remember one friend telling me, "Relationships aren’t all they’re cracked up to be." If she truly holds this belief, I’m still mystified as to why she got married several years later.

Being a wheelchair user does make it very difficult to meet women for possible sexual relationships. Thoughts sometimes rumble though my mind of getting a call girl. Maybe this is immoral and illegal, but I know other disabled people who resort to that type of service to fulfill their sexual needs. It’s a difficult decision. What would you do if you were, God forbid, in the same situation?

I have wonderful women friends, and their companionship means so much. I know that asking them about the possibility of making compassionate love with me could tear us apart. I’m hoping to eventually find a close friend who is also willing to occasionally sleep with me. I don’t know if I’ll ever get married and have children, but I would be just as happy to have a life partner and lover.