So, it’s March, Cerebral Palsy Awareness Month. I trust you
are all aware of me, and if you are not, you will be the next time I scratch
your door frame. In this most celebratory month, I am enjoying the delicious
irony in the fact that palsy month takes place during the only month synonymous
with “walking in a stately, deliberate manner.” There are so many ways to
celebrate, I’m considering marketing an all- in- one Palsy Party starter pack:
a pin the wheel on the wheelchair game, a variety of classic easy-open
microwave meals, an emergency response guide for when that one friend thinks it
would be fun to play Twister and falls—the possibilities are endless. While I don’t
want to suck the joy out of party-planning, here are ten more serious things I want you to
know about cerebral palsy (CP)…
1. I was born this way. Whoa, hold up. Not
exactly this way. I assure you I did not have a 450- pound purple power chair
while in the womb. That probably would have taken up too much space. However, I
developed CP before I was born, and I have always had CP. The exact cause is
not known, but I can surmise that my brain bled at some point. While I don’t
really care what the exact reason is, it’s pretty amusing to envision little
in-utero me turning to my twin one morning and saying, “Last night got pretty
wild. My brain hurts just thinking about it. I think I’ve come down with a
slight case of CP.”
2. The messages between my brain and my
muscles are… creative. I won’t bore you with a complex medical explanation
of what CP actually is, but hopefully this nutshell will help. In a person
without CP, the brain and nerves work together to regulate muscle strength and
flexibility, also called tone. The right balance of tone creates the message
necessary to move smoothly. Think of a text that says “MOVE LEG.” The messages
between my brain and muscles are more garbled, as though the two are late night
texting after a chaotic happy hour.
S See sample message below:
 | |
|
3. Cerebral palsy DOES define me, just not
entirely. Many a cheesy meme will tell you that a winning person with CP
will roll her institutional looking manual wheelchair (with no posture
supports) to the top of a mountain, put her arms in the air (boasting full
range of motion), and “not let CP define her!” Well, guess what? My disability is part of who I am, so it does
define me. It is not my entire definition, but I wouldn’t be me without it. Without
my CP, a lot would stay the same, but so much would be missing. Take my skill
for digging sprinkles out of a wheelchair seat for example. A hard-earned CP
associated talent they don’t teach at the career center!
4. CP is not progressive, but it is changeable. Pretty much every
medical page on the web will tell you that CP is not progressive. In the strict
sense, it’s not. It does not follow a defined degenerative course and I am able
to build muscle. But nonetheless, the way CP affects me can change. The cumulative
effects of too-tight muscles on bones result in me not being able to do many of
the things I used to be able to. Gone are the days of walking with someone
holding me and knees that bend past ninety degrees. It is easy to feel a little
guilty about functional loss and I used to struggle a lot with feeling that
maybe I could of would have should have used my walker more, sat up straighter,
done more physical therapy…. But I’ve learned that no matter what, some natural
changes in function are inevitable when your muscles have been faithfully
yanking on your bones with overzealous energy for 24 years. It’s sometimes a
bummer to stop doing things that were once easy, but for everything I’ve
stopped doing with the passing of time, I’ve done something new I never thought
I would. I may no longer use my walker apart from brief exercise sessions, but
increased time in a chair has enabled me to independently navigate a campus
without fear of falling.
(Ed Sheeran voice): When
your legs are more spastic than they were before... and you’re barely bending
your knees, remember darling, it’s not your fault, that’s getting older with CP.
5. Having CP is hard sometimes, but it’s not
for the reasons most people think. While my disability has very real
physical and medical consequences, and having crotchety joints is not always
fun, I don’t feel that there is anything “wrong” with the design of my body. I
spend a lot more time wishing the environment was more inclusive of those of us
who break the mold than wishing I could walk on my own or play football. If society
focused on building more structures that could accommodate wheelchairs, and
made it easier for disabled folks to get housing, jobs, and education, being
disabled would be markedly less challenging. This is not to say either that I
am opposed to all medical interventions, but at this stage of my life I am
mainly interested in those that control pain. I’ll pass on learning how to
skip.
6. “Are you disabled in your dreams?” Quite
vividly so. This seems to be a popular question, and I think many people
expect that my dreamscape is full of images of me playing extreme sports and
taking jaunty carefree steps. My dreamscape is something more of a
disability-informed “choose your own adventure book.” Common plotlines include
losing my Medicaid card, falling out of my chair, and having a home health
agency award you more service hours from a new program while “Dream Me”
explains that I can’t double dip and use two home care programs. In the one dream
in which I did climb a tree, a friend asked me “what the hell I was thinking.”
Good thing my friends look after me.
7. I don’t startle all the time because I’m
nervous. It’s a CP thing. If you know anything about my personality, I
probably AM nervous, but that’s not why I startle so often. Many people with CP
keep their moro/startle reflex, which makes us extra sensitive to sudden
noises, motions, and even smells. You can read more here.
8. You can call me disabled. It’s not a dirty
word. While different people will always have various opinions on proper
disability terminology, I do not have any issues with the word “disabled.” To
me, it is an adjective that is part of my identity, and it belongs after “I Am…”
just like “American” or “female.” While I won’t be upset if you call me a “person
with a disability,” I will be upset if you say that’s the “right term.” My
personhood should already be assumed, and I shouldn’t have to reemphasize that
I am a person.
9. Asking questions about my disability has a
time and place. Most of the time, I enjoy answering questions about my
disability if I perceive that doing so will make some small impact in the
effort against ableism, given that questions are asked politely. However, this
does not mean that I am eager or obligated to answer every inquiry when I’m out
shopping, hanging out with my friends, or heading to class. Disabled people are
not mobile educational tools, and sometimes, I need a day off from “raising
awareness,” to be a Joe schmo human being.
10. Growing up with CP, being around others
with disabilities has been valuable and empowering. I have been fortunate
to grow up within a rich community of others with disabilities. Seeing and
learning from people who share my experiences from an early age has allowed me
to be proud of who I am and to swap resources with folks who have “been there.”
If I didn’t have CP, I most likely would never have met some of the best people
I know.
Happy Cerebral Palsy Awareness Month to all!
