Thoughts on Identity and Cerebral Palsy

I write often about identity often because living with Cerebral Palsy, a developmental disability, is a direct window into how people see, understand, and dare I say it, tolerate me. My best friend says often to me: No one wants to be tolerated, Harold.

In recent years, I have been on a collision course with this very statement understanding that despite my best efforts, most people did just what my friend said should not be done.

How do you tackle the complex task of finding your own truth, when those around you have comp-licitly planned to only give you a “tolerant” story-line? If identity is the things that make you similar or the series of quirks that make you, who you are…

How have those who say they “know” me shaped what I am “compared” to? How many other Cerebral Palsy patients have gone to college, survived the conflict of Creole, African-American identity, and mostly survived to tell about it?

You must watch how much power you give people and their opinion…

The first thing I struggled accepting was: People habitually acknowledge only the parts of one’s identity that seem most safe. Once that happens, it is nearly impossible for people change their stubborn self-willed minds.

I had to confront the idea that there are some people who will always see me as some weird, cartoon-character of a person.

I’d like to think that I’ve been a great actor, able to mask a good stage show of the discomfort I have experienced knowing that my Cerebral Palsy is the one thing about me I truly pretend my way out of.

This fact is supported by the thousands of onlookers I encounter on any given day at any grand ole’ time.

These onlookers are defined as: casual people that find it freeing to stare at me, make inappropriate jokes at my expense, don some caricature of me when they think I don’t see them.

Worse yet are the parents of children who come away from my vicinity too afraid to explain to their young ones, that you should not ridicule a disabled person… especially if the disabled person can see you doing such a wretched thing.

Maybe, that onlooker is your six year old kid.

Maybe, it is your eighteen year old daughter who is presently waiting tables at Applebee’s because she is constantly going over that very limited data plan your wireless company made you keep.

Perhaps, it’s you. You were shopping at Walmart and you saw me trying to buy a loaf of bread and thought something is off about that guy buying bread.

You were an on-looker who did not have the heart to dialogue with me about this weirdness between us. So in an effort to be tolerant and a bit evasive, you said it’s better if I ignore that weird look I gave that dude in aisle 4.

When people see me walking, talking, dancing, and interacting, I can imagine they might see some pious know-it-all masking himself as a “special needs” person. I have something I’d like to say to those people. That whole idea that I’m this person trying not to be just like you, is some lie you told yourself to obfuscate the notion that I am okay for living with Cerebral Palsy.

For the record, my mental and physical characteristics have never really fit with that whole “living with Cerebral Palsy thing”. In fact, Cerebral Palsy was for a long time … the condition that had people selling the story that I was mentally retarded, because these people just refused to face that I potentially knew more than my “physical limitations” represented.

For years to combat my knowledge gap, I became a sage or oracle of some sort. Because having arthritis, swollen feet, rock hard hamstrings, and veins full of anxiety medication was too much like failure. And I was determined not to damage my affinity for sarcasm, wit, music, and poetry.

While I built my own knowledge base, I reveled in the idea that although my emotions were driving me nuts, my learning never stopped.

But knowledge without direction is just arrogance and pride. And those two together amped up my anger. I was angry about the missed dialogues that I failed to have with people I loved. I was angry about the missed opportunities to be with people who treated me less like something to fix, and more like something to believe in.

I was angry that I watched the people I had helped abandon me. And more often, I was afraid that I would forever be living my truth dependent solely on the shoulders of other people’s identity. The truth is: I had been a locked away sponge soaking up the thoughts, dreams, fears and strifes of all these complicated people. And that only made me a temperamental, anxious, git of a person.

But no person with Cerebral Palsy lives in a vacuum. We all must take the ashes of a life burned down, the trauma of confused onlookers, the judgments of angry deceivers and decide never again to be tolerated. I needed to find out who I was despite my physical problem.

I finally did go to therapy. I discovered that because I had settled for being tolerated… There were very few people that I truly connected with. And that’s what human beings are looking for. We are built to be connected with.

We are not looking for the person that places us on a pedestal and tells us we’re perfect. If we were looking for perfection, there would not be so many stories of men and women with seemingly perfect lives deciding to kill themselves.

We are looking for at least one person that knows that our favorite TV show is “Absoutely Fabulous”, or that we only like a certain variety of Sara Lee Bread from the supermarket. We are looking for the man that consumed by his girlfriend’s passion for literature, read every book that Toni Morrison wrote just because he knew she admired her.

We are looking for the person that can hear every detail of our tragic lives and say: I’ll help you get through it.

The thing is: Character is more than the set of qualities we pick up from our doting parents. And identity is more than the boxes checked on that form you get while applying for a loan, a doctor, or a license. I wish that someone had told me sooner that having Cerebral Palsy was not the reason people were ugly to me… that Cerebral Palsy was one primary characteristic in a series of other complex parts of my onion.

I wish someone had said to me long before I needed a therapist…that Cerebral Palsy is not a reason for selfishness, pity, or shame. Being viable is not the same as the as being connected.

I used to believe that if I was “proficient” at the game of life, the viable things I offered others would come back to me.

Tolerance cannot heal invisibility. Humans have a very elastic threshold to face things they find intimidating. Being someone’s therapist, mentor, researcher, singer, musician, social worker, publicist, editor, or motivational speaker was the shiny object offered in exchange for the hours of static noise when my own passions were frenetic.

Today. I am better at not reacting to the verbal abuse that plagued me all those years before. I am better facing the idea that I must seek my own purpose. And when I began behaving in relationship to my disability instead of in opposition to it… I learned that I could be fulfilled without being angry and frustrated.

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