“Beyond The Box” Part I

Mar 19, 2012
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Our current health systems, while gradually changing, have taught numerous professionals, in my opinion, to think in boxes, to categorize by labels and diagnosis, rather than look at the sum of the whole. As a child, I remember hearing very technical and medical terms like “Spastic Diplegia”; (the type of Cerebral Palsy that generally affects both legs); or “Spasticity” (involuntary movement which can include stiffening of muscles). 

I knew that I was the subject of discussion but did not understand what was being said.  All I knew was people were touching me, prodding me, tapping me with instruments to test reflexes and other functions and the results ended up being written in folders with my name on it.  I felt like a science experiment.

Over the years, I have encountered various types of work styles with professionals including:

Professional 1: – The Explorer/Scientist/Mechanic… Kerry’s Hamstrings don’t work… Her hamstrings and gastrocnemius muscles are tight.  Kerry is the experiment/project in the room – What can “we” do to get her to be like the image of function we know?  What can we do to “correct” the anomaly…?

Professional 2: The Realist… What is…Is…  She has x and y capability… that is all there is.  Maintaining function is the “best” that can be gained.

Professional 3:  The Drill Sergeant… We have a set program for Kerry; we are going to push her.  She is going to achieve the defined goal.

Professional 4: The Maverick… the out- of- the box thinker that recognizes the need for a different lens and has the willingness and ability to try different approaches to accomplish what needs to be accomplished.

All of these work styles illustrate a varying level of expertise, comfort level, and awareness.  In each case, it creates a role where I must be a student and a teacher to level the playing field.  I often sat on the treatment mat or table watching while discussions were occurring about me; feeling isolated, very small, and compartmentalized.

I remember feelings of wanting to escape or run away.  It did not matter how big the room was.  I was not restricted but I felt boxed in.  I would become quite distressed because I did not know how to say at the time that I was not an object, a subject in a box or experiment to be studied.  I was there.  I was sitting in the room and had a very clear perception of events.

Those feelings of vulnerability were a driving force that caused me to become a skilled student about all aspects of my disability.  I learned everything that I could about Spastic Cerebral Palsy.   I had to learn to be constructively vocal and learn to ask questions in the right way.  I had to learn the same terms, learn about the therapies, and protocols just like the professionals did to establish productive working relationships with them.  I learned that I was choreographing an intensive and dynamic relationship with the professionals, and nothing about it was standard or routine.

Read Part II of Beyond the Box Tuesday March 20,2012.

Author: Kerry

  • SB Willow

    this is good. I like Maverick best! But Kerry we need more videos woman! show us how it’s done girrllll!