Living with a disability is no one’s idea of a cakewalk, least of all the disabled person. People who meet me on the street probably characterize me as happy and well-adjusted in spite of my difficulties. They see that because it is the face I work hard at projecting. They don’t see the antidepressants I’m prescribed, they don’t know that because I can’t drive it took me more than two weeks of bartering, planning ,and rescheduling to take this trip at all, even though it’s just to Walmart or the local mall, they didn’t see the frustration of having plans moved back for the third time in as many weeks. All they have seen, all they will ever see, is a polite, engaging woman in a wheelchair accompanied by a golden retriever and Australian Shepherd, willing to answer the same half-dozen questions she was just asked not five minutes ago by the people ahead of her and the check out line.
Sometimes keeping that up is the hardest thing I do in a day. So why do it? For me at least, the answer is simple. I keep the façade up because most people can’t handle the truth, it would either frighten or depress them or both I am not some celestial being without fault come down to cast some angelic light on those around me. Both my parents were military and my mother once lived in a Navy town, both things are quite evident in the level of creativity with which I can swear.
I have no memory of the universe ever asking how I felt about my life being seen by others as an object lesson. I accepted a long time ago that even though I don’t remember getting a vote, that was indeed how a lot of the outside world would be my life. As a kid who spent a lot of time in and out of hospitals, I went out of my way to make friends with nurses, doctors, and orderlies.I pride myself on the fact that I have never let the amount of pain I’m in dictate how I interact with hospital staff. I am no better or worse than the next person who makes for a difficult patient but I have the ability to remember that these people in the hospital did not willfully cause me pain for the purpose of watching me suffer, they are truly only trying to help. Not every person they take care during the day can see past their immediate pain and so I hope I have made their day a tiny bit easier.
Many people’s knee-jerk reaction to hearing the word disability is sadness.Statistically speaking, most people will have to deal with varying degrees of disability simply because everyone gets older. Recently my sister has started referring to disability as a lifestyle and initially I didn’t agree with it because I tend to use the word lifestyle to refer to things over which a person has a level of control and I have about as much control over being disabled as I do about the fact that I was born with brown eyes. I do have some level of control over how people perceive my disability though so perhaps lifestyle fits better than I initially thought. I do not want people to equate disability with sadness and I realize that for many people I know I may be their only reference to what cerebral palsy looks like. In fact, in my tiny town, I would not be surprised if I was the only reference to disability in general.I am naturally an introvert but will smile and talk to a complete stranger about my disability for as long as they care to have the conversation. I may have answered the exact same question 15 minutes ago but I will do it all over again. To a nondisabled person, disability is often scary and daunting, alien. If I can humanize it by answering the same questions 1000 times in a week or in a month maybe when the person in the wheelchair moved in next door they will ring the bell with a casserole in hand. If a person they work with is Deaf or hard of hearing they now make a conscious effort to speak more clearly and slowly so that person can read lips easier, maybe they even took sign language classes. If even one of those things happens to one person because of conversations I’ve had in the mall or in the grocery store then it’s all worth it I am not here to be an inspiration, what I here to do is in some small way, leave the world in better condition than when I found it