A Letter to Cerebral Palsy, From an Old Friend

This piece was originally featured on The Mighty in March 2015. I am re-posting here on my personal blog. I no longer wish to be associated with The Mighty in light of recent editorial decisions that allow for the publication of demeaning and undignified articles. I sit in solidarity with disabled people and their allies who condemn this kind of media exploitation.

Dear Cerebral Palsy,

We go back a long way, CP.  You might say you’re my life partner, my ride or die companion, or that Facebook friend with whom “It’s complicated.” Especially during the month of March, cerebral palsy awareness month, a lot will be written about you, and so much of it, by people who only think they know what life is like with you. So, as someone who really knows you, deeply and completely, I hope that anyone who wonders will read this and learn the truth about our adventures.

You don’t always make my life easy. Some days, my muscles feel really tight for no reason, and my joints feel like they are rusted in place. Because of you, moving is a task, and I imagine the way other people feel after they go to the gym is the way I often feel after walking a couple hundred feet or trying to sit up. But too frequently, people assume that everything about you is bad. That couldn’t be further from the truth. Even though you can be a pest, you have also brought so much good with you.

You have allowed me to see the world in a very important way, one that allows me to notice people and things that without you I may have overlooked. You have taught me to treat differences with reverence instead of fear. I shudder to think that without you, I may have said or done some of the ignorant things that are directed at me by those who do not understand the experience of disability. Without you, I may have been one of those people who block the accessible parking spot with a shopping cart without a second thought. I may have been one of those people who can only see wheelchairs as a tragedy instead of a sweet ride. I may have made terrible and dangerous assumptions about what it means to lead a valuable life, or I may have been a person who does not even know how to look at someone with a disability. I sure am lucky it did not turn out that way.

 A lot of people think that you “do not define me” or that they are giving me a big compliment by saying that “they don’t see you”. You are not my whole definition, but you are a piece of it, and without you I wouldn’t be the person I am today.  If people can’t see you, they can’t see me, because you are a part of me. It is not like there is a place where I start and you stop or you stop and I start. You have colored my every experience, fueled my quest to find every disabled character in all of media, and created a sense of humor that relies quite heavily on your antics. When I ponder the question “who am I?”, you are part of the answer. I am you and you are me, because it is impossible to say who I might have become without you.

Of course there are moments when I wish I didn't need so much help and moments when I really wish I could shower on my own. The idea of being able to go to the bathroom without anyone else there sure can be tempting. More people than I care to count are aware of the pattern on my underwear. The list of frustrations goes on. However, because you're in my life I have friends, doctors, nurses, personal care assistants, physical therapists, and so many other people who I never would have met otherwise. The loved ones you have brought onto my path are worth more than an infinite number of solitary showers. Not everyone you have introduced into my life has been kind, and you have made me aware of ugliness in the world that other people can blissfully ignore. But more so, you have shown me beauty, and helped me understand that though the world can be ugly, more often it is beautiful, and filled with people whose goodness is astounding.

I have been left out of things because of you, and because you're here there are offices and restaurants and schools and cute little boutiques that are off limits to me because they are not built for people in wheelchairs. However, I've learned not to be angry at you, because those places say so little about us and so much about the people who built them. Love builds places and spaces with room for everyone.  My life with you is neither 100% joy nor 100% struggle, but that is not the nature of life with a disability. That is the nature of life. You are not something to “battle” or “fight” or “suffer from”. You just are. That’s good enough for me.

Love,

Kathleen

Image: Me in my wheelchair in a green hat, sitting in front of a large mural.