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Living with CP often involves focusing on ability, not ‘disability’
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It is estimated that some 500,000 children and adults in the United States manifest one or more of the symptoms of cerebral palsy. Currently, about 8,000 babies and infants are diagnosed with the condition each year. In addition, some 1,200 – 1,500 preschool age children are recognized each year to have cerebral palsy. – Texas Adoption Resource Exchange (TARE)
I have lived with the symptoms and adversities stemming from cerebral palsy (CP) for over half a century. I wasn’t born with this neuromuscular disability; I acquired it as a result of what I believe was a case of unintentional medical negligence on the part of a maternity ward nurse at Miami’s old Cedars of Lebanon hospital.
According to my late mother, I was born eight weeks before my due date, which is a huge risk factor when it comes to CP. As a result, I was also tiny and underweight, which are also risk factors.
Still, Mom said that if that maternity nurse, who was probably tired or even momentarily distracted, had not forgotten to turn on the oxygen supply after placing me in an incubator, I probably wouldn’t have acquired cerebral palsy in the first place.
Of course, life as a disabled person in a society which is obsessed with youth, attractiveness, and the ability to do physically demanding tasks is not easy. Even in my case, where the damage to my brain’s motor control center was relatively mild in comparison to others whose CP is far more severe, I’ve often been defined for what I can’t do than for what I can.
Some of this “Oh, so you can’t do ___ because you have a disability” feeling stems from real negative experiences in my past. It was easy and commonplace for me to fall into a can’t do mentality when I couldn’t land a job at my favorite bookstore because the manager wouldn’t even interview me. Or, even worse, when a girl said “No” when I asked her on a date because (a) I didn’t have a cool car or (b) a job with a big salary.
Whether or not I had legitimate reasons for having these “can’t do” feelings, I had to learn how to not fall prey to them. It’s never easy. It is almost always easier to take a path of least resistance and throw yourself a pity party than it is to face adversity head on and accomplish something.
As Harold Arlen and Johnny Mercer put it in their hit song “Ac-Cent-Tchu-Ate the Positive”:
You’ve got to accentuate the positive
Eliminate the negative
Latch on to the affirmative
Don’t mess with Mister In-Between
Consider this. When I was in my twenties, I used to fall into depressive states because I couldn’t follow my childhood dreams of joining the armed forces.
I’ve always been fascinated by all things military – the hardware, the uniforms, the roles and missions of the different services, and especially military history. So, when I was nine, I somehow convinced myself that I’d join one of the Big Four services (the Army, Navy, Air Force, or the Marines – it never occurred to me to join the Coast Guard).
It was, I know, a foolish notion, and Mom tried to tell me – as gently as possible – to choose a more realistic career path. But it wasn’t until sixth grade that I realized that my physical limitations would not let me get past the recruiter’s doorway, much less go through the rigors of basic training. (The only satisfaction that I have about this deferred dream is that I can talk about military topics with veterans or even active duty personnel and sound knowledgeable about them.)
There are, of course, still times when I look back at my youth and wonder what my life would have been like if I didn’t have CP. Would I have been a good military officer? I’ve been told that I could been one. But then I look at what I can do and the things I have accomplished – and then I don’t feel so bad.
For example, when I was 14 years old, I promised myself that I would become a writer. I didn’t have any idea what kind of a writer I’d be, but I had a feeling that I could do it. I liked to read (an important factor in a writer’s life; you have to read constantly in order to learn your craft), and even when I was in elementary school I showed that I had a bit of storytelling talent. So I focused on excelling in language arts classes, especially in high school and in college.
I eventually decided to major in journalism and joined my community college’s student newspaper staff. During my multi-year stint at Miami-Dade College, I worked my way up the ranks from staff writer to managing editor. I wrote news articles, had my own column, helped write unsigned editorials, did all kinds of reviews, and was even the paper’s first foreign correspondent when I went to Spain on a study-abroad trip.
So, yeah. I didn’t get to serve my country or go into space as a NASA astronaut (another childhood ambition). But I can still be a useful member of society and make a living doing what I can do.
