Cerebral Palsy: What It Isn’t
July 25, 2010 § 22 Comments
All too often, as a college and pre-medical student with cerebral palsy, I’m asked what cerebral palsy is, but no one ever seems too concerned with what it isn’t, and to me, that’s the most important part.
Too many assumptions and stereotypes plague the world of chronic health than do the positives, the abilities of patients, and the strength of their families.
I’ll do you a favor. Let’s explore a few things that cerebral palsy isn’t, and I think that by doing that, you’ll find that you’ll know exactly what the diagnosis means!
Cerebral palsy isn’t a sickness. I’m not contagious, and neither is anyone else who has the diagnosis. Nor am I (some with cerebral palsy have underlying conditions that do cause this) chronically sick. I have a pretty weak immune system, but I think getting through my entire first year and a month of college without dorm-induced illness is a feat for anyone. Especially me, who spent half of her pre-kindergarten year at home with the flu. But yes, this means that you can approach me or anyone else with cerebral palsy to say hello. Though some may not be able to answer you with their mouths, let me just say that technology is an amazing feat of the modern day, and you may be surprised at the response you receive! Though I may be in pain on some days, the pain is usually induced by the pressure on my knees that is caused from walking with a “crooked” gait for fifteen years as of November 5, 2010. Thankfully, after an NSAID, I’m usually okay, and there’s no sickness involved!
Cerebral palsy isn’t synonymous for stupid. All too often it is assumed that because a person’s executive functions are impaired, it must mean that they are “stupid”, and honestly, this is the most far off assumption I’ve ever heard. Many times, though an individual may not have the ability to have a conversation with you doesn’t mean that he or she doesn’t understand what you’re saying. This brings me to another point. Avoid using the “parentese” tone with anyone with a disability. “Parentese.”(Think: A mother encouraging her 15 month old child to walk. Yep, that voice. From my side of the table, just because “I walk funny” doesn’t mean I can’t balance a chemical equation or solve a complex calculus problem. There’s been some serious re-wiring, otherwise known as plasticity, that has occurred in that trusty ol’ brain of mine. I can run like Forrest, and thank goodness I’ve got legs. Because Lieutenant Dan sure doesn’t have any!
Cerebral palsy doesn’t mean that someone can’t be an independent thinker. For some of us, thinking is our only independent escape. Fortunately, I was able to move to school and gain that element of independence; however, I’m not driving. There are often people in our lives who have been caring for us our entire lives, and they think they know best. The truth of the matter is that parents are simply a voice. Discouraging independent thought is a sign of disrespect to all, but imagine. if thinking was the only way you could express yourself, how would you feel if someone intentionally robbed you of the ability?
Cerebral palsy doesn’t mean that someone can’t have a productive, healthy social life. As for me, I love going out with my friends to enjoy a nice dinner, a cup of coffee, some ice cream, or whatnot. Surely, it will take me longer to walk to a restaurant near our school, but does that mean that my social life is limited? Most definitely not. The same is true for many people with varying degrees of severity of the diagnosis. Just because you think a wheelchair or other piece of equipment is complicated doesn’t mean that the person using the equipment can’t enjoy socialization. In fact, the equipment that they use is often the one thing that enables them to have the ability to socialize. Think of wheels as figurative feet. In my situation, most of the time, one of the reasons that I may not be available to socialize is due to fatigue. Fatigue in a 20 year old? Yes, it’s very much a part of my life that I would give up in a heartbeat, but when you expend the same amount of energy at 9am as the average person does by 9pm, it makes it difficult to justify not getting adequate rest. If you’re worried that someone might be fatigued and feel guilty for asking them to tag along for dinner or coffee or the like, just ask. Typically, with the many things that cerebral palsy requires of us lucky ones, we’ve mustered up the whole “saying no is okay” thing.
Cerebral palsy doesn’t mean we should be treated any differently. Whether you’re in school, in the workplace, at home, or in public in general, we all have a reason to be where we are. In the case of the workforce, all people applied, interviewed, and have the qualities necessary for the job. The same goes for school. Regardless of the challenges we face, we’re all qualified to be in our own place, in our own stage at any given time. Equality, as with honesty, is always the best policy.
The bottom line is that people, regardless of their diagnosis, challenges, or whatever else life has thrown their way, are just that. They’re people, which means that they have emotion, that they have a voice, and that they have an opinion. It’s an absolute honor to have challenges, and I wouldn’t trade mine for the world.
So, just what is cerebral palsy?