Beyond the Box

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: TheExplorer/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: TheMaverick

The Maverick is 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.

A good teacher sets high expectations for achievement; they provide the vision, knowledge, and a plan to move ahead.  When I work with a new professional, I am looking for certain qualities.  Are they a Maverick… the out- of- the box thinker that recognizes the need for a different lens when dealing with a disability?  Do they have a willingness and a level of skill to try different approaches?  Do they have patience, confidence, and an ability to provide direction?

In turn, I try to display the qualities of a good student—that I am focused, set goals, am confident, and that I have a positive attitude and am open to direction.  A good student prepares, is not afraid to ask questions, is respectful, and is always on time.  I switch between a teacher and a student role.    When I work with professionals, I have to become knowledgeable about specific therapeutic techniques and what should be occurring with those prescribed methods.  I have to learn to keep pace with each professional based on their training, practice, and protocols.

Initially the new professional and I are not on equal footing.

I often have to challenge academic teaching, theories, and what the person has read or heard about Cerebral Palsy.  There can be a tug- of- war between what the textbook says compared to what professional sees when they work with me.  I often have to teach, encourage, and give confidence to the professional to trust me and what I share about the “in the skin” experience with my disability.

I have to show the professional that I am the master of my own body and clearly know what my strengths and weaknesses are. I have had to learn how to fine-tune how I engage with professionals.  This includes how I relay and share information.  I have learned to use different vocabulary and communication styles; sometimes my methods are short and to the point or are very detailed.  I had to learn when to be forceful and when to be calm about my wishes and when to clearly steer my treatment direction.

I have had to become a skilled facilitator.  Becoming an effective facilitator is a mix of several skills including listening to information that is conveyed by the professional, listening to instruction and repeating the information back to be clear, asking questions, and being able to put into words what happens when a particular technique is tried.

As we train new professionals coming into the Health and Fitness fields, we need to instill more Maverick-type qualities; seeing the person absent the diagnosis and moving beyond the box.

This article was originally published in the “Endless CapABILITIES Blog”, and National Center on Health, Physical Activity and Disability, sponsored by The National Center on Health, Physical Activity and Disability (www.nchpad.org). NCHPAD is part of the UAB/Lakeshore Research Collaborative and supported by Grant/Cooperative Agreement Number U59DD000906 from the Centers for Disease Control and Prevention (CDC).