Month: February 2018

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).