Wiley's Walk

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).

I came across an old photograph from 1979. In the picture, I am lying across a therapy ball that is about four times my size. My Dad is swaying me back and forth on the ball, performing my nightly stretching exercises. The exercises were designed to keep my leg muscles loose and pliable.

When I look at that picture, I see a happy kid not yet overwhelmed by notions of disparity, difference, or concepts of disability. In that picture the concepts of etiology (causes of a condition), diagnosis,  and disease were foreign to me. I was just “exercising” and hanging out with my Dad.

While all of these medical –oriented notions like etiology have their place, I am frequently reminded of the incongruence of these concepts and the idea that people come first, especially in program design and implementation. A recent session with my trainer brought the “people factor” notably back into focus for me.

My trainer asked one of his colleagues to work with their client in another location of the fitness center. The room that we would be working in was warmer. My trainer knew my muscles would be more pliable and would respond better in the warmer temperature.

They also knew that I would be less distracted from the music playing on the main floor coupled with the bustle of other the patrons. The request to have their colleague move locations gave me the space, quiet, and poise to work through the new nuances of my routine.

My trainer once said “People are my business”.

What does that mean in practice? My trainer is aware of factors which impact my performance outside my diagnosis and the etiology of my disability. They make specific efforts to remove elements such as cold, restricted space, and distraction which might impact and complicate my participation, movement, or access.

The introduction of more space and quiet space assists me if I respond unexpectedly to a new exercise method (e.g. have a limb go spastic, rigid, or spasm). The extra space can also remove feelings of self-consciousness and the sense of spectacle that can result if a lot of people are around and something goes awry while implementing an exercise.

The “people factor” as described here infuses consideration, dignity, and respect of an individual into the formation and implementation of a health, fitness, or exercise plan. In our existing health and disability fields, people not diagnosis in my view, should be our first and most important business.

This article was originally published on March 14, 2012, 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 define accommodation as any change that helps a person overcome or work around their disability. The change can be physical (e.g. moving to a different location, making additional space, or moving furniture or equipment to clear an aisle). The change can also be programmatic (e.g. giving a person more time or providing equipment to assist in task completion). In the context of fitness environments, accommodation can mean moving activities to a different room or moving portable equipment like mats, balls, hand weights, etc. out of an aisle. Programmatically, accommodation can mean allowing a person to work 1:1 with professional or using adapted equipment (e.g. a ball with audible bells, guide ropes for running, or larger equipment).

Within this piece, I am not addressing legal requirements for accommodations, accessibility, or similar mandates. I am raising opinions and considerations about practical accommodations and requests.  As a person with visible walking issues, more than anything I just want to fit in with my colleagues, co-workers, and peers in any and all environments. I recently attended a class which was held in a three story building with no elevator.

I wrestled with the question before physically attending the class, “Do I announce myself and the presence of my walking issues?” I wanted to participate in the class and activities without my walking issues being excessively highlighted, put in a spotlight, or over-emphasized. When I disclose my walking issues or a need for an accommodation, a spotlight frequently can be turned on which screams “Kerry has needs which are not typical of others”.

This issue of accommodation and when to raise it can be difficult. When does a person remain silent and when does one speak up about their accommodation needs? The considerations and meter that I use for accommodation requests are:

◦When does the request interfere with general business?
◦When does the request interfere with the needs or activities of other people?
◦Does the request create a circumstance which over-isolates me or embarrassingly singles me out?

I advocate for accommodations when the request does not require extraordinary measures. If what I am asking for is something simple like moving equipment out of an aisle, I will work with and/or repeatedly raise the issue with appropriate personnel to get the equipment moved. I also try to make sure the change I am asking for will benefit more than one person.

In the case of the new class, I made the decision to acquaint with myself with the instructor. I introduced myself by phone, inquired about the class structure, and I inserted the following statement in my conversation. “By the way, you need to know that I walk with walking poles, and that I intend to join this class.”

There is a slight pause. The instructor said, “We currently hold the class in a room that would require you to walk up three flights of stairs.” I could hear the silent dialog happening in their head.

“What kind of accommodations will this woman need?”

I replied, “I am able to climb up and down stairs, but can have difficulty.”

The instructor continued, “We would be happy to explore getting an alternate room.” It was refreshing to not have the “disability spotlight” flashed on me.

In the exchange:
◦Disclosure of my walking issues had to happen to make my needs known.
◦A willingness existed on the part of the instructor to change the class location once my difficulty was known.
◦A physical adjustment to space was made which would allow me to fully participate with my peers.

I hope more people with disabilities can have encounters like the one I had with this instructor.  I also hope that professionals can be inspired by my encounter and see that providing an accommodation can be simple, reasonable, and feasible and can be done without the “disability spotlight”.

This article was originally published on March 12, 2012,  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).

The definition of thriving is “to develop well, to grow, prosper and flourish.” I started to consider what factors have allowed this to happen in my life.  The first major influence is the group of people who have taught me how to thrive and then supported me to achieve over time.

This group of people includes my parents, siblings, doctors, teachers, physical therapists, and other professionals who truly saw who I was even though the disability was present.  These people have supported me to develop the skills I needed to thrive in academics, in a full-time job, and in my community.

In some ways this article is a mini thank you letter to those people.  In another way it is a call to raise awareness.  Key people supported me by setting expectations, serving as role-models, coaches, and general supporters – those who gave me encouragement to try,  be tenacious, and persevere.

While I was growing up, I had the feeling that I could do anything with the right tools and support. My family and then later a broader community made me feel empowered. Empowerment is defined as “a process of becoming stronger and more confident, especially in controlling one’s own life.” [i]

My parents created the foundation of empowerment by setting clear expectations.  I was expected to work hard and to perform to the best of my ability. The fact that I had Spastic Cerebral Palsy (CP) did not excuse me from achieving academically, participating in activities, or fulfilling responsibilities.

If I could not perform something physically, I was taught to find a way to adapt. If I did not understand something, I was taught to ask questions with the intent to understand. If I needed help or support of some kind, I was taught to find the right people and ask for the support I needed. Learning how to ask questions and learning ways to effectively engage people are the building blocks of self-advocacy.

Self-advocacy is frequently defined as “an effort to speak up and work on one’s own behalf to make positive decisions and/or to positively influence situations .”[ii]   In both my adolescence and adulthood, I frequently have to speak up to get what I need.  Part of that process often includes engaging a group of people to make necessary changes.

Performing well academically was always important to me.  I struggled in mathematics.  During my junior year in high school, I was in danger of not performing well on a statewide exam.  I found myself turning to the well ingrained principles of:

1. If you don’t know something, ask questions, and
2. If you need help, find the right people or resources, and ask for help to achieve your goal.

I recall approaching my math teacher from my sophomore year.  I requested his support and time to tutor me on the math concepts I was missing.  I also approached my eleventh grade math teacher.  I requested his help using the same rationale.  I sought support from people who had the expertise and the willingness to make sure I succeeded.

Because these two teachers saw my determination to pass this exam, they became committed to helping me achieve this goal.  Both agreed to work together to help me pass the exam that was only weeks away.

They spent hours with me, tutoring me, reviewing key principles, giving me practice questions, reviewing my mistakes and explaining where I made the mistakes, all in an effort to ensure that I would perform well.

What happened? I performed well on the exam. In fact, I received an 84 as a final grade; on an exam where it was questionable if I would pass.   Yet, something even bigger happened.  I learned what can result when people are willing to engage and support someone with a high level of determination and the passion to succeed.  I saw and experienced what effective advocacy can do.

The foundations of empowerment and self-advocacy are established and fostered from the people and the environments we engage with the most.  As parents, teachers, friends, and neighbors, let’s help children and youth with and without disabilities thrive as a result of high expectations and a willingness to engage.

[i] Itzhaky, Haya; Alan York, “Empowerment and Community Participation: Does Gender Make a Difference?.” Social Work Research. National Association of Social Workers. 2000.

[ii] Schreiner, Mary B. “Effective self-advocacy: what students and special educators need to know.” Intervention in School & Clinic. Sage Publications Inc. 2007.

 

 

When I read about Spastic Cerebral Palsy (CP), I see terms in articles like “neuro-motor abnormality”.   When I see these terms, I want to have a lengthy conversation with the writer about re-conceptualizing how CP or any disability is presented.

I don’t see enough research or hear sufficient conversation about the causes, onset, and prevention of secondary conditions. It has taken me over 40 years to gain an understanding about CP and the way I move. I had to read textbooks and study aspects of Spastic Cerebral Palsy to more fully understand concepts like an overuse injury and how my normal patterns of movement were likely causing the injury.

By the time I was 10 years old, I had three surgeries to correct orthopedic deformities that would have impeded my long-term mobility and ability to walk. I learned to walk by using support devices; first crutches and then canes.  My parents and I dealt with physicians, physical therapists, surgical procedures, and continuous physical therapy to develop improved mobility through a series of stretching exercises and repetition of movement patterns.

In my 20’s, I was in charge of how I would manage my CP.  I would go to the routine Doctor’s visits and was instructed about what I needed to do keep myself flexible and preserve my long-term mobility. However, I did not perform the recommended exercise routines. I had to experience mobility decline to start to follow through with stretching and other exercises.
I had to experience the loss of mobility and function to truly understand the amount of work and commitment that it takes to preserve long-term mobility. I had to experience the consequences of my choices.

A person reading this might ask, “Why didn’t Kerry just exercise?” The answer to this question has many responses. I didn’t like exercise, I didn’t want to exercise, I was a bit idle, and I did not think the consequences from a lack of exercise would happen.

In my 20’s, I used a motorized scooter to navigate around a big college campus. I also continued to use two canes as mobility devices, but got a bit lax because it was a lot faster and easier to sit on a scooter seat and arrive at my destination in 5 minutes compared to 15 minutes if I walked. Using the motor scooter made it easier to get from one place to another and it also was the most convenient option. I did not see or pay attention to the impact and consequences of my immediate choices.

The result was a significant decline in mobility and an increase in stiffness. I had to take action to counter these elements. The “action plan” included physical therapy and swimming at least 3 times a week.

My journey with exercise has been variable. There are times when I stick to a very rigid routine and other times when I do very little. During the times when I do not exercise, it is often because I lack the impetus, energy, or motivation to exercise; I may be lacking the physical ability to perform the exercise, or I may be experiencing fatigue. Mobility decline is often the biggest factor and motivation for me to carry out the range of exercises that I have been instructed to do.

In my 30’s, I discovered the challenge and onset of secondary conditions. Examples of secondary conditions include weight gain, pain, and fatigue. Literature identifies secondary conditions as “a medical condition or conditions that stems directly or indirectly from a primary disability.” i

One article I read, said “there is a general lack of understanding of secondary conditions for people with disabilities. This lack of understanding includes the onset of secondary conditions, the progression and severity of the condition, and further how to prevent it.” ii

I have experienced this lack of understanding about secondary conditions first hand. In my 30’s, I started to develop pain in my arms, shoulders, and back. The origin of the pain was not clear. My Doctors attributed the pain to Repetitive Stress Injury (RSI) or overuse of my shoulders, arms, and back to move. Strategies to prevent overuse injuries include basic elements of exercise such as strengthening and stretching.

By the age of 30, I learned I really had to direct my own course when it came to the treatment and management of my CP. I had to actively seek and gain the support of physicians and other health professionals, to develop a team of people who knew me and also had specific knowledge of Neurology, Orthopedics, Joints, and Kinesiology (Human Movement) to help me
create, actively engage in, and maintain my long-term mobility goals. My goals include prevention of injury and protection of my long-term mobility.

Over four decades, I was instructed about exercise routines that I needed to do. I did not understand why I needed to do the exercises or ignored the importance and purpose of the exercises. It was not until I experienced RSI and other secondary conditions that I started to wholeheartedly engage in prevention.

People with disabilities, physicians, and other health care providers need to partner and collaborate in prevention. People like me need to be engaged early (e.g. before middle school) and be taught to:

1. Understand the complexities of their disability;
2. Understand the concepts of prevention; and
3. Actively engage and carry out practical prevention strategies to thwart the later onset of RSI and other secondary conditions.

Health professionals including physicians, physical therapists, and other fitness providers also need to understand and address factions like lost impetus, lack of energy, motivation and fatigue. True prevention of secondary conditions needs to include teaching and engaging youth and adults with Spastic CP and other disabilities in exercise, healthy eating, and general health promotion.

Citations:

i.  Rimmer, J. H., Chen, M.-D., & Hsieh, K. (2011, December). A conceptual model for identifying, preventing, and managing secondary conditions in people with disabilities. Physical Therapy, 91(12), 1728+.
ii. Rimmer, J. H., Chen, M.-D., & Hsieh, K. (2011, December). A conceptual model for identifying, preventing, and managing secondary conditions in people with disabilities. Physical Therapy, 91(12), 1728+.

 

Hello!  My name is Kerry Wiley.

I have contemplated starting Wiley’s Walk for a while.  I have written blogs and articles in other places about my experiences with a disability.  People have repeatedly asked me “Why don’t you have your own blog?”

Before I launched my own blog, I wanted to be sure I had something to say.

As I begin this journey with my own blog, and  share “my walk”, I wanted to first share a couple of articles that I have written that highlight my experiences with  Spastic Cerebral Palsy, Disability, and Inclusion.

I was born with a condition called Spastic cerebral palsy. When a person investigates spastic CP, explanations and language like, “Spastic CP can affect both arms, legs, and balance,” or “Spastic CP makes arms and legs stiff, rigid, and resistant to flexion,” appear within research and literature.

Words are powerful. They can create a framework or a “box.” This box can establish a structure of thought, practice, opinions, and conclusions that can be erroneous. I like to push beyond the box and move away from a disability- centered frame to a person-centered frame.

Growing up I did not wear a label; I just moved differently. My parents intuitively understood that I was their daughter first and foremost. I was raised to thrive despite using walking devices or the presence of a medical label.

The term “spastic CP” was just that, a label. I did not grow up in a “disability-centered” household. I was raised by parents who did not label, categorize, or stigmatize the oldest of their three children for the way I moved or functioned.

The environment and support structure in which I was brought up instilled the lessons of “no limits.” The idea that there is always a solution when a challenge or obstacle presents itself was my truth from an early age. My parents modeled behaviors that I adopted and carried forward in my adulthood. They may not have called the concepts they taught me by their academic terms – self-determination, person-first, inclusion, or advocacy—but these concepts served as the basis for how I now live.

Within literature, self-determination refers to an “individual’s ability to consider options and make suitable and appropriate decisions or choices within their home, school, vocation, and community. Processes of self-determination assure control of one’s life,” (Schloss et al., 1993). In the most practical terms, self-determination means developing independence, engaging a system of supports within communities, and having a voice.

Growing up with Spastic Cerebral Palsy

The world I grew up in was one where I was engaged, active, and connected with my peers with and without disabilities. My environment was focused on person-centered approaches and inclusion. I define inclusion as active participation and engagement with my peers, with and without disabilities. When I needed support, I engaged the people (professionals, family members, neighbors, and friends) that I needed, and created the tools and supports I needed, if they did not already exist, to thrive.

The diagnosis of spastic CP was not something I wore like a heavy weight. Growing up, I had no idea that I had a lesion on my brain. The way I moved was just how I moved. I found ways to make what I wanted to do happen –for example, if I wanted to play field hockey, I played the game, and I played it with my peers without disabilities. I followed the rules of the game and played with the field hockey stick duct-taped to my walking device. I was an active participant with my peers, and I secured the accommodations that I needed. The field hockey stick that I used might have had a slight curve so that I could hit the ball/puck a bit more easily; that curve of the stick made my access and participation easier.

I also experienced some challenges from spastic CP. Examples of challenges included access within my physical environment, as well as misinformation about my condition and erroneous assumptions that were made about my capabilities due to the visual presence of my walking devices.

Early on, I learned to engage with people and systems, including medical, fitness, and community systems. My mission as early as I can remember was to begin to positively change existing attitudes, perceptions, and misinformation about disabilities. I learned to hunt for, find, and use information, research, and data to create creative alternatives to the “box.” I’ve had the opportunity to become a professional in the disability field, specializing in program development and policy to move beyond the construct of the “box.”

The concept of disability and diagnosis can label, categorize, and stigmatize individuals. For over 20 years, I have worked to change how the concept of disability is perceived. I work to inspire and challenge people to move Beyond the Box.   I look forward to sharing more of Wiley’s Walk…

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).