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?
Well written post. Thank you for your insight. I especially enjoyed the paragraph on CP Does Not Mean that You Can Not Be an Independent Thinker. Favorite line:
” 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?”
Thank you again.
Thanks, Margaret! Thanks for reading!
I would probably feel trapped, betrayed and frustrated.
As well as worthless.
And I do also wonder what the person who deprives individual thought gets out of it.
How do they feel?
Remarkable post, Erin. There are so many misconceptions surrounding CP – content like this helps us to keep it all straight. And independent of what CP isn’t, what’s important is that you’re living proof that one is not defined by their physical condition.
Thanks so much, Dr. V! I really appreciate that! Thanks for reading!
Love this! I have several friends w/ CP and we’re all in this together when we go out! I’m loving the idea of you showing and LIVING your life out loud so people can experience you. I have a very good friend from grad school who is a “lefty by default” in that she was born paralyzed and is confined to a wheel chair- but has the use of her left arm … I want to introduce you… she is, like me, a sociologist and a medical and disability educator — but I think you two would get a long. I’ll intro you on FB and twitters.
You are a bright shining start! Am exciting to watch you!
Cheers!
-Melissa
Hi.
I’m also familiar with “Lefty by Default”.
And, yes, the blogger and Erin would probably get along very well.
Overstreet wrote two very good posts:
Social Media, Reality TV and our values
Fever’s charm
Great piece on something that you rightfully address as an expert. We all make assumptions about interactions with people with disabilities that are unfair and have much more to do with our comfort level than theirs. May you continue to speak with a loud, clear voice as your education progresses. I look forward to seeing more…
Thanks so much for reading, Dr. McLaughlin!
Excellent post, Erin. Thanks for spreading the good word! I’d add this: cerebral palsy isn’t a one-size-fits-all condition. Sometimes, people are surprised to learn that Max has cp. I’ve actually heard, “How can he have cerebral palsy? He walks!” It affects every person differently, depending on the part of the brain that was damaged.
Thanks for the kind words, Ellen! That’s the reason it’s such a joy to have the blessing of CP. You get a unique situation that’s all your own, which truly makes each person an individual. Max is a truly special little boy, and i’m honored to “know” your family!
Great post, Erin. I’d love to use it as an intro for residents that come to Gillette, with your permission. Your writing us very articulate, and your expertise in the area is well reflected.
Oh, absolutely. I’d be honored! If you need anything else, please feel free to let me know!
Great post!
Here is another “Cerebral Palsy isn’t”:
“Cerebral palsy is not wrongful birth or wrongful life”.
What do you think about that?
Because a lot of people assume that it is, and go into the courts on that basis.
And it causes a lot of grief.
A beautiful and poignant post Erin. Thank you for pointing me here!
[...] of Cerebral Palsy which she clearly talks about in her blog including the post called “Cerebral Palsy: What It Isn’t“ All too often, as a college and pre-medical student with cerebral palsy, I’m asked what [...]
[...] Like other chronic illnesses, it comes with assumptions and stereotypes, which she dismantles in “Cerebral Palsy: What It Isn’t.” I predict that her experience will make her a compassionate [...]
Strong post, authoritatively communicated. Thank you.
One of the most memorable people I’ve known was a 70 year-old patient with severe cerebral palsy, who showed everyone around him that despite his disabilities he could neither be discouraged nor dismissed.
Thank you so much for your comment! I’m glad you enjoyed the post!
[...] Cerebral Palsy: What It Isn’t [...]