Author: kwiley

I recently read an article by Barbara J. Linney called “Surviving in a world of change.” Ms. Linney effectively illustrates that when unwanted change is thrust upon people, we experience a range of emotions.  The emotions go  from denial to anger, anger to sadness, and then evolve to feelings of emptiness and loss. 1 

The article made me think about how people manage significant changes in their lives and deal with the emotional earthquakes, aftershocks, and impact, that frequently results from major changes.

Simply put, change is messy. Change disrupts our routines, what is safe, familiar, and comfortable. Some changes are irrevocable. Change causes permanent endings.  It  creates a sense of longing for what we knew before the change took place.

In another article I read on this topic called “Managing Change Transitions”, the  author Sara White, defines change as an external event that is situational such as a getting a divorce or accepting a new job. 2  

Transition on the other hand, is the internal, psychological process that people go through as they come to terms with the change.  Change Transition is defined as the reorientation process people go through.  It is the process we navigate to move from an ending to a new beginning.

At the start of the process, old ties, connections, and routines are broken. 3  People go through a process of reassessment and experimentation.  The goal is to reorient and re-conceptualize a person’s role in the new  and altered conditions or environment.  Ms. White describes the process as casting off a shell. 4

The element of Change Transition that I struggle with the most is the ‘no man’s land’ or neutral zone that comes from trying to navigate between the old landscape and the new. 

When I think about that in-between space, I am reminded of road trips where the GPS seems to malfunction and sends travelers in circles or miles off the main roadway. A reorientation and recalculation have to happen.

Questions we face in the experimentation phase include: “Where do I fit now?”

Finding the “fit” might mean mingling with a new group of people, trying out a different form of physical activity or sport, or recruiting a mentor to help explore different opportunities. I have recruited many mentors over time. Each mentor I recruit is a person I respect who has a particular expertise. My mentors help me to identify:

a) what my goals are,

b) what I need to accomplish my goals,

c) what resources I need to find, and they challenge me to think differently and to use available resources differently.  

As difficult and emotional as the phases of Change Transition are, the outcome of the process is growth, new beginnings, and new opportunities. Tell me, what Change Transitions have you found the most difficult? What strategies did you use to support yourself or a loved one  through the transition?

1. Linney, Barbara J. “Surviving in a world of change.” Physician Executive, Feb. 1994, p. 39+.

2. White, Sara J. “Managing change transitions.” American Journal of Health-System Pharmacy, vol. 65, no. 24, 2008, p. 2334+.

3.  White, Sara J. “Managing change transitions.” American Journal of Health-System Pharmacy, vol. 65, no. 24, 2008, p. 2334+.

4. White, Sara J. “Managing change transitions.” American Journal of Health-System Pharmacy, vol. 65, no. 24, 2008, p. 2334+.

 

People frequently ask me questions about my disability.

I am asked:

“Can I ask you what happened?”

“Why do you walk with ski poles?”

The best variation that I have heard of these two questions was,
“What congenital anomaly do you have?” I had to laugh.

I did not mind the question. I was amused by the person’s choice of words. My reply was that I had never heard the question put quite like that.  To the person’s credit, they got it half right.

Spastic Cerebral Palsy is a trait I attained from birth. The part of the conversation that was not right is that Spastic Cerebral Palsy is not a disease.  When a person or group start using terms like “disease” or  “abnormality”, it starts to create cracks in what is otherwise whole.

Other questions that I am commonly asked are harder to answer such as:
“Am I ever bitter or angry because I can’t run or walk without devices?”

My childhood was a happy one.  I have always used a set of crutches, canes, or poles to get around.  Use of these devices was my starting point.  It was my “normal”.  I never knew anything else.  Therefore, I never mourned or experienced a sense of loss.  How can I mourn something that I have never experienced?

My life has never been “typical”.  I did not stand alone until the age of four. The key is that the skills for mobility were developed.  I had access to the sets of crutches, canes, and poles that gave me the freedom to navigate.  I do not walk in a “typical” way.  I drag my feet and swing my hips to move.  The key is I move.

A common story from my childhood that I share is about wanting to skate with my brothers when they got their first pair of rollerblades.  My parents found these really cool skates for me that slid over my shoes.

I had to learn to find my balance with these skates and had to use my walking devices for support.

In my mind, I created a new sport that was a combination of skiing and skating, but I learned to skate. I was able to actively play and participate with my brothers. Adaptability and really cool skates created my normal.

I have written articles about the impact of labels. Terms like Spastic Cerebral Palsy and disease have their place in medical settings. My wish is that articles like this one start to soothe the cracks and damage that words like “abnormality” and “not typical” create.

I have seen and felt the anguish of parents who are dealing with a new diagnosis. I have been asked “Can you tell me what “it” is like for my child?” This question comes when their child has some form of Cerebral Palsy.

There are four main types of Cerebral Palsy: spastic, athetoid, ataxic and mixed. While I acknowledge some traits of Cerebral Palsy may be recognizable, the level of severity and how it impacts every person varies.

My response to parents is as gentle and caring as I can make it. I share that I can only relay my experience. Spastic Cerebral Palsy affects both of my legs. I need devices to balance.  My diagnosis is just a part of my life. I was encouraged to adapt and find ways to do and accomplish what I wanted.  I share that I feel my life experiences have been rich and fulfilling.

When I answer questions about “What is wrong”, the answer really is that there is nothing wrong.  I just had to find a different way. I share the skate story highlighting the cool adapted skates.  After the exchange, there is often a visible change in the person’s  face. I know something has shifted in their perception of my condition.

My goal in responding to the “common questions” and sharing the skate story is to change the focus from “atypical” “abnormal” and  “out of the norm” to adaptability and possibility.  Different is not a bad thing.

Recently, I went in for a series of routine and preventative screenings and tests. I had to have the tests performed adaptively, where  I was seated in a chair versus standing to have the tests performed.  As I entered the room, I informed Kate, the medical technician, that I would need to have the tests performed while I was seated.

I was nervous.  I was looking for a hesitant or perplexed expression from the medical professional that can sometimes mean “I don’t know what to do here”.  I did not see that look.

Kate had introduced herself.  She clearly explained the purpose of the screenings and tests, what would happen, and what I needed to do.  Kate was efficient and assisted me to get the tests done; assisting me to find ways  to maintain proper alignment and body position in the machines.

The tests concluded and I was almost giddy with relief.  I thought,  “Good, this is over.”  I was not expecting the phone call that indicated an anomaly had been found.

“Good Afternoon Ms. Wiley”.  The woman said.  “I am calling about your screening.  We need you to come back in for additional testing.”

One of the first questions I asked, was “Could the results be wrong because I was seated when the test was performed?” The medical professional assured me that the test results were accurate and repeated that I needed to be seen for follow-up testing.

I went to the hospital for the follow-up tests.   It felt like I was part of an assembly-line.  The first step was a review of my information, patient records, and insurance.  Once the in-take was complete, I was shuffled into another room so that the initial screening test could be re-done.  After that test was complete, I was shuffled into two additional rooms so that more pictures and imaging could be taken using different machines.

I laid on the metal tables with sweaty palms, feeling cold, and exposed.

The three waiting rooms I was ushered into during this process were awkwardly silent.  Several people were seated in rows of chairs.  The only sound was the occasional rustle of an old magazine.  Most people were playing games or reading something on their cell phone.  Some people I knew were there for their first visit.  Others I knew were having additional tests or were waiting for the results like me.

When my name was called, I was shuffled into a final room where I would get my test results.  I heard people talking about what they were going to order for lunch.

I remember thinking, “My life is potentially about to change and people are deciding what kind of pizza to order…”  I jumped when the door opened a final time.   The medical professional came in with my test results.

The follow-up tests came back negative.

I heard the word “negative” and I felt myself exhale.  No one wants to get the unexpected phone call that something is wrong.  No one wants to have to go for follow up screenings and tests.

Coming out of the experience, I am thankful for Kate, the medical technician, who initially engaged with me and walked me through the  diagnostic testing purpose and processes.  During the follow-up at the hospital, I felt increasingly exposed and shuffled.

Sensitivity, empathy, and purposefully engaging a person, sharing information, and preparing them for what is next, becomes even more critical and important during follow-up diagnostic procedures.  People’s lives are frequently impacted and changed in some way.

I certainly hope that when that unexpected phone call comes again for me, I see and interact with more “Kate’s” and experience less of the assembly-line and shuffle.

Burnout is a subject that has been widely researched in the Health, Sports, and Fitness disciplines. Studies show links between burnout and musculoskeletal diseases including chronic neck and back pain and osteoarthritis for women and cardiovascular disease in men. [i]

Literature I have reviewed on this topic discusses the effects of burnout on professionals including Doctors, Nurses, Physical and Occupational Therapists, Coaches, and a range of other Health and Fitness Professionals. Literature also emphasizes the impact of burnout on families and caregivers.

While research has proven that participation in physical activity and leisure reduces depression, and anxiety; improves mood; and supports social interaction for people with and without disabilities, [ii] I did not find the concept of burnout for people with disabilities who are engaged in athletics widely covered in available research.

I read an article called Understanding Athletic Burnout: Coaches Perspectives, which described the signs of burnout for both amateur and professional athletes. Identified signs of burnout included: a lack of interest in athletic activities; the idea of ‘going through the motions’ without being fully committed to a defined set of goals and tasks; and a general lack of progression toward envisioned goals. [iii]

Athletic burnout is defined as “a psychological, emotional, and physical withdrawal or devaluation from a previously pursued and enjoyed activity as a result of excessive stress.” [iv] When burnout manifests, a person who was actively engaged in a sport or a training program withdraws. They become dissatisfied and listless. The person may also exhibit irritable behavior.

Over the last several years of implementing my fitness and walking program, I’ve had times where I have just gone through the motions. I felt extreme frustration, felt discouraged, and even cynical. I lacked physical and mental motivation. I was not invested in moving forward with my efforts to walk device-free. Research indicates that signs of burnout tend to appear when an individual feels a loss of choice and ownership in their program. Burnout also appears when a person is plateauing in their program. [v] When thoughts like “What is the point? Why am I am doing this?” cross my mind, it is a signal that I have likely hit a plateau in the developed program; I am feeling bored, “fed up”, or just physically or mentally exhausted.

Thomas Raedeke and his colleagues suggest using training methods like periodization and cross-training; which uses several methods to train or combines exercises, to combat burnout. [vi] They suggest implementing a variety of training formats and breaking away from established fitness routines to fight burnout.

While the referenced training strategies in the Understanding Athletic Burnout: Coaches Perspectives article have proven effective for athletes without disabilities in managing burnout, recognizing the signs and characteristics of burnout for people with disabilities engaged in athletics is an area that needs further study.

As an athlete and a person with a disability, I have exhibited the documented signs of burnout over time. I have displayed some of the highlighted characteristics including dissatisfaction, listlessness, and irritability.  After reviewing the research on burnout, I am more conscious about past experiences I had and didn’t understand or was not aware of at the time. I wonder, how many Health and Fitness Professionals working with me would be able to recognize signs of burnout that I might show? Would they know how to support me to combat my experiences of burnout?

I know that I will be more alert to the potential of burnout as I progress in my fitness and walking program. Health and Fitness professionals need to be mindful of the fact that burnout can and does happen to people with disabilities engaged in athletics. They need to be attentive to the potential signs of burnout to be able to intervene more quickly.

People with disabilities engaged in athletics also need to be educated about the signs of burnout out how to prevent it.

[i] Perceptions of wellness and burnout among certified athletic trainers: sex differences. Keith E. Naugle, Linda S. Behar-Horenstein, Virginia J. Dodd, Mark D. Tillman, and Paul A. Borsa. Journal of Athletic Training. 48.3 (May-June 2013) p424.

[ii] Haworth, J. T., & Veal, A. J. (Eds.). (2004). Work and Leisure. New York: Routledge.

[iii] Raedeke, Thomas D.; Kevin Lunney,; Kirk Venables. “Understanding athlete burnout: coach perspectives.(Statistical Data Included).” Journal of Sport Behavior. University of South Alabama. 2002.

[iv] Raedeke, Thomas D.; Kevin Lunney,; Kirk Venables. “Understanding athlete burnout: coach perspectives. (Statistical Data Included).” Journal of Sport Behavior. University of South Alabama. 2002.

[v] Raedeke, Thomas D.; Kevin Lunney,; Kirk Venables. “Understanding athlete burnout: coach perspectives. (Statistical Data Included).” Journal of Sport Behavior. University of South Alabama. 2002.

[vi] Raedeke, Thomas D.; Kevin Lunney,; Kirk Venables,. “Understanding athlete burnout: coach perspectives. (Statistical Data Included).” Journal of Sport Behavior. University of South Alabama. 2002.

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).

I recently read an article by Carla Kimbrough-Robinson called “Change Happens: Deal With It.” Ms. Kimbrough-Robinson writes about how change is inevitable.  She asks her readers to take a personal inventory, prepare for changes, and to seize opportunities. [1]

I recently celebrated a Birthday.  Birthdays are my time for reflection and taking stock.  In my mind, I do not feel any different and yet change has happened all around me.  In the last year alone, I have had close family move out of State.  I changed jobs.  Change of any kind is scary, unsettling, uncertain, and messy.  It takes time to find a new equilibrium.

A person reading this might think after living with Spastic Cerebral Palsy (CP) for over 40 years, I would be prepared for and used to change.  The stiffness and spasticity I experience from CP changes daily.   Spasticity is a condition where certain muscles, leg muscles in my case, are continuously contracted.  This contraction causes stiffness or tightness in the muscles and interferes with movement.

There are days when my legs refuse to bend because of the stiffness and other days when my legs are very loose and pliable.  Regardless of how stiff or spastic I am, I have had to learn to adapt and acclimate to changes in my mobility and environment.

My typical way of adapting is to push through any task or challenge.  The Nike slogan “Just Do It” could be my mantra.  Yet, sometimes that mantra has failed me.   Pushing through can be harder due to an injury.  In November of 2015, I broke bones in my right ankle.

When I broke the ankle bones, it was like I ran into a brick wall and life came to a screeching halt.  I discovered I could not “Just Do It”.  I was forced to stop.  I could not accelerate the healing process even though I searched for ways to get back on my feet faster.  I have written about this injury in other articles. I found that I just wanted to get back to my life as I knew it and what I was used to.  I wanted to return to my usual routines, complete mobility, and independence.

A line in Ms. Kimbrough-Robinson’s article is one that I wish I had written. “We get comfortable with routines or a certain lifestyle and get nervous when change knocks on our doors.” [2]  When change knocked on my door, I became very fearful and uncertain when rehabilitation and mobility strategies that worked before did not work in the same way.  I had to find a new way.

I had to be educated about how my recovery would be slower and longer than expected.  Professionals often have to remind me to slow down and to quiet my “Just Do It” mentality.  My mobility and function have changed.

I now look for and go to the flat curb cut to get onto sidewalks or into buildings versus trying to maneuver steps and curbs that remain too high. My approach to improve my mobility has become more incremental.  My walking program is currently focused on improving strength, flexibility, and re-developing movement patterns.

The mantra of “Just Do It” has been modified slightly to say “One step at a time”.

[1] Kimbrough-Robinson, C. (2008, March 1). Change Happens: Deal with It. The Quill, 96(2), 35.

[2] Kimbrough-Robinson, C. (2008, March 1). Change Happens: Deal with It. The Quill, 96(2), 35.

My efforts to walk without devices frequently remind me of trying to unscramble a scrambled egg. An egg cannot be unscrambled because once heat is applied it changes the composition of the egg. Similarly, I am trying to defy existing patterns and mechanics I have used for over 30 years to move and learn new ones.

I have dubbed the general labors of my walking program as “training” because of the frequent repetition, coaching, and drills required in my efforts. After years of working with a series of fitness professionals, I started to think about what elements have remained constant in my training.

In my training, there is a lot of repetition— demonstration and reiteration of visual and verbal cues from the professional I am working with along with correction of posture and limb position to try to impress a pattern in my brain that is foreign to me.

Process

When you scramble an egg, first, you are supposed to crack and thin the egg with milk. Then you are supposed to whisk the mixture until everything is combined. Finally, you cook the egg over a particular level of heat.

When you walk, the process is supposed to look something like this. A person is supposed to stand “tall” with a straight back. A person is also supposed to bend their arms approximately 90 degrees at the elbow I learned; and swing with the opposite leg. When this sequence is performed “correctly”, it is supposed to balance the body.

When a person walks, their heel is supposed to hit the ground first and then there is supposed to be a type of “push off” from the toes. There are other nuances about having steps of equal length… When my efforts to perform these walking steps do not come together as intended there is a re-introduction to the steps and sequences and the process begins again.

Repetition

During one training session, like many sessions before, I stood in the middle of the fitness center training room with two thick, long, black ropes laid out by my feet. The ropes are there to act as guides, and I walk in between them. I walk back and forth between the ropes approximately ten to twelve times.

The fitness professional working with me regularly intervenes and maneuvers my ski poles, (my replacement for crutches), straight ahead, closer to my ribs and sides, or in some other pattern. They support the adjustment of my foot position. I hear the verbal cues, “Use your legs, not the poles,” and based upon the adjustment, I repeat the sequence. During my completion of the sequences, the fitness professional might have me perform the walking drill outside on cobblestone, concrete, or inside on a carpeted or a wood floor surface. Regardless of what the surface is, the sequence is the same.

The Result

Once heat is applied to an egg, there is no going back. Once an egg is cooked, the flavor, texture, and consistency of the egg are different. When I work with a fitness professional, we are striving for the creation of new movement patterns. Unlike scrambling an egg, I am trying to break and unscramble old patterns to establish new ones. Once the process starts, there is no going backward and I have been forever changed by the effort.

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).

A runner stands at the runner’s blocks waiting for the signal to take off. When the runner hears the signal, they find their stride, pace, and their movements fall into a rhythmic cadence. Their legs carry them a particular distance. They have developed and refined their skill through repetition. When they reach the finish line, they have likely achieved a faster time, improved a specific skill, or accomplished a personal goal.

Every time I walk into the Fitness Center, I try to “gear up” and mentally prepare for the upcoming session. I sometimes wonder if I experience the same feelings as a runner in training. I have felt a sense of anticipation, nerves, and adrenaline.  I have felt a sense of readiness but may not have the skills yet to advance toward the next step of walking device-free. I had to learn how my upper body connected to my lower body.  I had to learn to stand tall.

Like the runner in training, I learned to climb hills, learned various maneuvers and drills. Like the runner in training, I navigated through more than one injury, and have also had false starts, falls, and many occasions where the “run” needed to be done again.

I had to learn three core principles which became a mantra: “First, posture, then stability, leads to improved mobility.” Posture defined in the broadest terms means standing tall.  In my case, stability means literally learning to stand on both of my feet without walking aids. Improved mobility means that I am gaining skills that I need to walk without devices, but in a larger sense it means expanding my opportunities, expectations, and reaching a little farther and a little higher.

Most people regardless of having a disability want to reach their “highest level”.  They do not want to have fewer opportunities. They do not want to settle for average or less. A runner in training is not going to settle for “middle- of- the road” running skills or an average time. They train to improve their skills or running time.

There are points when running is harder compared to others; but the runner will eventually find their rhythm and cadence.  There have been a number of times when I have fallen and have not reached a goal.  Yet, like the runner in training, I have had to revisit the principles of standing tall, finding my stride, and setting the pace.  If I fall, I get up.  There are times when getting up is harder. There are times when I need help to get up again, but I get up and try again and again until I achieve the goal or improve the skill.  Settling for average is not a part of the equation.

My gains have come from the willingness to try and fall. My gains have also come from the willingness of other people (my trainers, physicians, etc.) to work with me to explore, try, and adapt strategies. They willingly engage with me in non-traditional methods; even though the initial outcome might be that I fall. The key is they respect my choice to try and fall.

I am learning to stand tall through this process.  I have sought to challenge people to look at the notion of disability through a different lens.  Now, I have a new call—refuse to settle for middle- of- the- road or average. When you fall, get up, and try again and again.  Like the runner in training, reach for the highest level, the fastest time –whatever the goal, reach higher!

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).

 

Robert Frost writes about choices and decisions in the famous poem “The Road Not Taken.”

My favorite lines in the poem are:                                                                               “Two roads diverged in a yellow wood,                                                                            And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could…”

I have stood on that divided  path.                                                                                        I have had those moments of angst where I had to decide,                                “Do I go right or left?”

The journey that Frost refers to has no straight path. Similarly, my walking journey has had steps forward, unexpected twists, and forks on an invisible road. I chose the rocky and experimental path where I would experience pain and frustration. I would also learn to relish the small wins and every point in between. When I took the first steps toward the decision to try to walk without support devices, I had no sense of where the road would take me.

The first thought I had was, “I want to do it.”

The second was, “How do I do it?”

I made choices to engage with a team of professionals that had wide-ranging expertise, including having no specific knowledge about Spastic Cerebral Palsy.

I wanted the professionals that I worked with to have no preconceived notions about what I could or could not do. I wanted them to walk the unknown path with me; to guide and teach me, and to support me to advance.

I had to develop strong alliances. The professionals that I chose to work with had to show me a high level of commitment, a passion for their work, and demonstrate that they would use innovative methods to accomplish the defined goals. Each professional had to understand what I consider to be critical points of decision-making including:

1.  When to initiate;

2.  When to move forward;

3.  When to rethink the plan; and

4. When to guide or prompt me in another direction.

The professionals working with me had to agree to support my primary goals of reducing pain and improving my general mobility. They also had to support nurturing a broader vision to help me realize my full potential. They had to form and cultivate a vision that I could and would be successful at walking without support devices full-time.

In the beginning, I tried a little bit of everything. One professional used passive modalities. Another focused on resistance training. I also tried a team approach, working with three different professionals to blend their unique methods and expertise. We used different exercises, different modalities, different levels of intensity, and duration – searching to find a perfect formula that would lead me toward my goals. We learned the formula that we were looking for did not exist.

The choices and decisions that I have made at different points included what exercise methods and interventions to use, how long to try them, and when to stop, reflect, and potentially choose a different path. Each attempt and decision I made brought me further down the path, where I would sometimes wonder, “Am I making the right choice?”

The beauty about the Frost poem is that there is no absolute. When I began my journey, I knew what I wanted. I wanted to be free from the constraints of pain—a raw, intense, and unyielding awkwardness and discomfort that tested me physically, emotionally, and spiritually. The only thing I knew for sure when I began was that the struggle and pain were not going to beat me.

Like the character in Frost’s poem, I often had two distinct paths that I could take.  I had to look down the path. I had to see what I was capable of.     I frequently had to be guided forward by the professionals working with me.  I needed them to walk with me and help me decide what path to take.

This article was originally published on April 8, 2013, 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).

 

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).