Charile and His Horse: Perceptions of Pain

Growing up I experienced cramps of such intensity in both of my legs that I would break into sobs because of the strength of the pain.  In most cases, a hurting and weeping four-year-old does not have the expressiveness or coherence to say anything beyond “It hurts.” I did not have sufficient words to explain anything about the pain I was experiencing.

When the Doctor said “You had a Charlie Horse”, I thought who is Charlie? And where is his horse? I did not connect or understand that “Charlie Horse” was a label for my muscle pain.  When I was old enough to start asking questions, none of the doctors or therapists could fully explain the cause of my leg pains.

The hypothesis was that the pain was a result of involuntary contractions (spasms) of specific muscles.  Most often the pain occurred in my calves and hamstrings.  The spasms could occur at any time.  When I would wake up with the leg pains, my parents would use massage and passive stretching to provide relief. Thankfully, the experience of this specific pain was often short-lived.

As I get older and my experience with Spastic Cerebral Palsy evolves, I have had to become more versed in complex topics, such as pain, that I wish I had no need to know.  Pain can be insidious.  I have felt the “pins and needles” sensations of nerve pain, the burning, and the electrical shock sensation.  I have been hyper-sensitive to touch and palpitation.  I had to learn to distinguish between muscle pain and nerve pain by the amount of time (duration) the pain lasted and whether or not I felt an ache or a burning sensation.

My experience with muscle pain has most often been of short duration.  I feel an ache, a dull but persistent kind of pain that lasts a few hours or a couple of days.  My experience with nerve pain is often as a sharp and burning sensation that can last for a few hours or last weeks at a time without going away.  There are times when medical intervention (e.g. medications) can alleviate the discomfort to a degree and times when there is no level of relief.

There are days when I feel like the child who woke up in the middle of the night.  I can remember wanting “Charlie and his Horse” to come and make the pain in my legs disappear.  When one experiences re-occurring pain, the age of the person does not matter at all.  The person just wants the pain to stop. The person may want to understand why they hurt, the cause of the pain, and how to make the pain go away, but first and foremost, they need the pain to stop.

Doctors, therapists, trainers, and other fitness professionals only witness reactions to pain or hear accounts about it.  They do not feel it directly.  Yet these skilled and capable professionals are taught to ask about the location, quality, and the intensity of the pain.  As skilled and proficient as I always try to be about the description and details about my pain, there are points when I fail.

The intensity of my pain can vary.  The pain can start in one spot and end in another or travel.  I cringe at the question, “What does your pain feel like?” The first thought that goes through my mind is “How do I explain the feeling of chronic burning?” Will the words burning, searing, throbbing, or steady burning, convey the message?  Has the professional ever felt like their skin was on fire?

Tools that Doctors and other professionals use to assess and diagnose pain are constantly improving.  The American Chronic Pain Association offers a number of resources which may be useful including a quiz on nerve pain, pain scales, brochures on pain management and understanding nerve pain, and a searchable database of resources. [i]

I would have loved to have a conversation with my Doctor about “Charlie and his Horse” when I was younger, so that I was more engaged, and had a better understanding of what a muscle spasm was.  In my adulthood, I am learning to have a better understanding of pain and related symptoms beforehand.  Is there a way to teach people about pain prior to dealing with searing or throbbing pain or steady burning?

Muscle relaxants and exercises are often the prescribed way of managing pain.  I wonder if there are ways to introduce the concepts of pain and how to recognize and deal with pain in a preventative context for children, who turn into adults who must manage their own version of “Charlie and his Horse” and pain?


[i] http://www.theacpa.org

This article were 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).

Adversity and Resilience

For eight weeks in 2015, life as I knew it stopped. I saw every doctor possible to identify the cause of a mysterious and unknown pain in my legs. By the fifth medical visit, I was exhausted. Every test that was conducted came back normal. However, I went from being able to walk three miles a day to not being able to walk across a room without feeling excruciating pain.

I argued with the doctors and representatives from the insurance company. I knew how to fight for tests that would help me to get answers and a diagnosis. I wrote letters that explained the pain I was experiencing was not typical. I had to gather medical information and records that verified this fact. It was only after receiving this evidence and documentation that the doctors wrote authorizations for a Nerve Conduction Velocity (NCV) test and an MRI. An NCV is a test to see how fast electrical signals move through a nerve. This test is done along with electromyography (EMG) to assess muscles for abnormalities. The NCV test came back normal. The MRI came back showing stress fractures in my ankle that were not visible from an x-ray.

After my foot was casted, I could not bear weight on my ankle for the next two months. When the cast came off, my first steps were tentative. I found I was afraid to put weight on my right foot. After a few steps, I realized I could move with the support of my walking devices. My right foot was weak. The loss of strength and function became evident by the increase in my foot drag, the visible turn out of my foot, and my inability to lift my foot up when I attempted to negotiate stairs.

In the weeks that followed, I asked the question I did not want to ask. “Did my aggressive approach to walk without devices cause this injury?” The medical professionals I worked with did not know the answer to this and could not tell me how to prevent the injury from happening again. They advised caution. The aggressive approach I was pursuing to walk device-free could have contributed to the injury. Their recommendation was that my exercise and fitness regimen had to change, be less aggressive, and focus on preserving my mobility instead of attempting to walk-device free.

An English author, Sarah Evans states the following about feelings of failure “Failure is hard. Whenever it happens, in whatever form it comes, however old you are, it will always be difficult. But come it will.” [1] I knew failure could come. I was not ready for it. When I looked up definitions of failure from various authors in health care and other disciplines, failure was defined as falling short or not achieving something desired.

I originally thought that not having answers about the cause of the pain in my legs was the scariest and hardest part of my experience. All of a sudden all of my effort and work had to stop. I did not expect the intense emotions that came after the injury. I was angry that the injury occurred. I was irritated with myself for being too aggressive with my exercise and fitness regimen. The broken bones represented a larger loss. I lost my sense of spirit, optimism, and confidence.

Adversity is defined as experiencing a hardship, for example, an injury or an illness. I suffered a temporary physical injury. In my mind however, I saw ten years of effort culminating into a perceived failure. The broken bones in my ankle made me feel vulnerable. Overcoming the sense of loss and disappointment that I had failed was hard. I was used to succeeding and overcoming obstacles.

Resilience is about finding a new path after a setback. I had to regain a sense of confidence and define a new outcome. Instead of walking-device free, the new goal involved identifying strategies to maintain existing mobility and trying to improve it over time. Tell me Wiley’s Walk Readers, how have you faced and conquered adversity?

[1.] Evans, S. H. (2000, March 13). Facing Up to Life in the Real World Can Be Hard; Sarah H Evans Says Young People Should Learn How to Deal with Failure. The Birmingham Post (England).

Active and Healthy Aging: The Keys to Living Well

In honor of Memorial Day and my friend Stella Wetterhahn … Stella Was A World War II Veteran and a Nurse.  She will be in my heart forever…

Every Saturday, after my workout, I get on a bus and head Downtown to meet my friend Stella. I have known Stella since 2007. She will be 92 in July. Stella is a retired Nurse. She served in World War II. Stella has never deviated from the schedule she had as an Army and Private Duty Nurse. She worked the 11:00 PM to 7:00 AM shift.

Stella and I meet at the local library because she likes to read the newspaper. When we meet, we discuss the daily news and chat about what is going on in the neighborhood. When we finish at the library, we head over to the corner Deli. I once asked her “what keeps you going at your age?”

Stella laughed and said “There are three keys:
1.Structure,
2.Getting out, and
3.Connecting with people”.

Without knowing it, Stella defined the concept of Active and Healthy Aging. Research identifies Active Aging as “the development and maintenance of optimal physical, mental, and social well-being and function in older adults”. [1] In her article, “A Concept Analysis of Healthy Aging,” Linda Hansen-Kyle defines Healthy Aging as “a process of slowing down while adapting to optimally function and participate in life.”[2]

A Review of Trends:

Research shows that Adults age 65 to 85+ are the fastest growing population and group; a trend that is to continue for at least the next 50 years. [3] Research indicates that 88 percent of Adults age 65 and over report having at least one chronic condition (e.g. Heart Disease, Diabetes, or Arthritis). [4]

The statistic in the literature that caught my attention said “one third to one half of woman age 70 and over have challenges with mobility”. [5] Several studies document the need for physical activity to maintain mobility and independence. [6] Research shows that the act of “getting out” and engaging in 150 minutes of physical activity is beneficial for older adults. [7] For people like Stella, the recommended 150 minutes can translate into 30 minutes of walking each day. [8] Stella’s definition of Active and Healthy Aging is going to library each day, going for a walk, and not staying inside for long periods of time.

My friend has a set purpose, destination, and routine for each day.

Stella’s reference to “connecting with people” means that she has an established social network. She has successfully created a system of support to address any needs that may come up. When Stella is not able to get outside due to inclement weather, for example, the Deli Shop owner will deliver food to Stella’s door. She receives the assistance that she needs from people in her neighborhood.

Stella’s reference to “connecting with people” is also corroborated by current research. Studies show that having a social network, engaging with people, and participating in social activities may delay cognitive decline and other health-related consequences. [9]

When our Saturday visits end, I walk away from Stella smiling. She personifies the keys of Active and Healthy Aging.  At the age of 92, Stella may move a bit slower and have occasional pain in her knees, but she thrives in her neighborhood and community.

She has taught me about resiliency, Active and Healthy Aging, and living. I know my keys to Active and Healthy Aging will include exercise, healthy eating, and activities to maintain my mobility and independence. What are your keys to Active and Healthy Aging?

[1] Marshall, V. W., & Altpeter, M. (2005). Cultivating Social Work Leadership in Health Promotion and Aging: Strategies for Active Aging Interventions. Health & Social Work, 30(2), 135-144.

[2]Hansen-Kyle, Linda. “A Concept Analysis of Healthy Aging.” Nursing Forum. Blackwell Publishers Ltd. 2005.

[3] Rogers, N. L., Green, J. L., & Rogers, M. E. (2012). Physician-prescribed physical activity in older adults. Aging Health, 8(6), 601+

[4] Marshall, V. W., & Altpeter, M. (2005). Cultivating Social Work Leadership in Health Promotion and Aging: Strategies for Active Aging Interventions. Health & Social Work, 30(2), 135-144.

[5] Marshall, V. W., & Altpeter, M. (2005). Cultivating Social Work Leadership in Health Promotion and Aging: Strategies for Active Aging Interventions. Health & Social Work, 30(2), 135-144.

[6] Rantakokko, M., Iwarsson, S., Hirvensalo, M., Leinonen, R., Heikkinen, E., & Rantanen, T. (2010). Unmet Physical Activity Need in Old Age. Journal Of The American Geriatrics Society, 58(4), 707-712. doi:10.1111/j.1532-5415.2010.02792.x

[7] Centers for Disease Control and Prevention (CDC). How much physical activity do older adults need? www.cdc.gov/physicalactivity/everyone/guidelines/olderadults.html

[8] Centers for Disease Control and Prevention (CDC). How much physical activity do older adults need? www.cdc.gov/physicalactivity/everyone/guidelines/olderadults.html

[9] Flatt, J. D., & Hughes, T. F. (2013). Participation in social activities in later life: does enjoyment have important implications for cognitive health? Aging Health, 9(2), 149+.

This article were 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).

Expectations, Perceptions, and Achievement

I came across a book called “Everybody Belongs: Changing Negative Attitudes toward Classmates with Disabilities.” by: Arthur Shapiro. The book was written several years ago and yet the themes from the book apply easily in 2019.  Mr. Shapiro’s book offers in-depth perspectives and strategies about how to change negative attitudes and biases about disabilities.

Mr. Shapiro’s book cites studies that show that the concept of disability is generally viewed negatively. [i]  Research shows that children develop misperceptions about disabilities by the age of 5. [ii] Mr. Shapiro writes about how we integrate attitudes, perceptions, and prejudices about disabilities very early from books, media, and through interactions in community settings like schools. Research shows that developed prejudices tend to increase and become more set as children progress through school. [iii]

The research highlighted by Mr. Shapiro gave me pause, misperceptions about disabilities form by the age of five.  I am bothered about the negativity that can and does exist about disabilities.  When I read that misperceptions become more fixed as children age, I become increasingly bothered.

I am bothered by an observation that I keep encountering, the idea that expectations for people with disabilities are generally lower. I read an article which cited research that said “people with disabilities are still habitually regarded as people to be pitied because of disability or admired based on minimal efforts and achievements.” [iv]

Based upon my review of this literature, I started to consider the idea of expectation in the context of my fitness regimen. When I started my fitness journey in 2006, I was originally driven by a notion that I would attempt to walk without the aid of crutches, canes, or any support  device, in all environments, full-time.

In the 13 years that have passed, my walking and fitness goals have shifted and changed from walking device free to improving and maintaining movement and ability.  However, the notions of effort, progression, performance, and the “can and try” principle created a standard of expectation and achievement in my program and goals.

Effort

I always make an attempt or a repeated sequence of attempts in a fitness task even if I do not achieve the intended result. The team of Fitness Professionals I work with expects 100% of my effort regardless of the nature of the task.

Expectations of my achievement have also increased over time. The  goals are always to improve, expand, and create ability compared to setting a standard of minimal achievement.

Progression

The team of Fitness Professionals working with me are helping me to learn new movement patterns, modify existing ones, and lessen compensatory movement  patterns that I have developed from Spastic Cerebral Palsy.

Performance

The Fitness Professionals provide feedback based on the performance I deliver or based upon the needs that they see. The feedback that I receive is skill-specific and not disability-specific. I am taught skills at a pace and frequency that support me to improve upon or achieve a specific task.

The “Can and Try Principle”

My team employs the “Can and Try Principle”.

Can I perform the task?

Not always.

Will I try to perform the task?

Always.

From this principle, my team of Fitness Professionals has supported a dynamic process and approach that determines the level and intensity of the support that I may need to learn or re-learn discrete skills to improve existing movement patterns or to learn new ones.

Mr. Shapiro’s notion of “Everybody Belongs” is an ideal that we have not yet reached, but is an end that we need to continue to work towards.  The concept of combining effort, progression, performance, and the “Can and Try Principle” has the potential of significantly raising individual expectations and general standards of achievement for people with disabilities in health, fitness, and many other settings.

Tell me Wiley’s Walk Readers, what other principles or approaches support increasing expectations and standards of achievement for people with disabilities?

[i] Shapiro, A. (2000). Everybody Belongs: Changing Negative Attitudes toward Classmates with Disabilities. New York: Routledge Falmer.

[ii] Shapiro, A. (2000). Everybody Belongs: Changing Negative Attitudes toward Classmates with Disabilities. New York: Routledge Falmer.

[iii] Shapiro, A. (2000). Everybody Belongs: Changing Negative Attitudes toward Classmates with Disabilities. New York: Routledge Falmer.

[iv] Harris, L. (1991). Public attitudes toward people with disabilities. New York: Louis Harris and Associates.

This article were 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).

Living without the Label

I am almost 44 years old.  I work and own my own home.  I earned more than one college degree.  Does it sound like I am reciting a resume? Sometimes I feel that way in my interactions with the world.

I have been called “inspirational” and “courageous”.   I am not these things. I am just a woman who tries to live the best life I can.  I often raise the question: What is “it” that makes me inspirational or courageous?

I walk differently.

My movements are stiff.  My hips swivel.  My feet drag. Premature birth caused me to walk the way I do.  Spastic Cerebral Palsy (CP) is the diagnostic label and the cited reason for the way I walk.

Cerebral Palsy is also the force that shaped my attitude, drive, and approach for living my best life.  CP is just a fact of my life.  I had to learn to adapt.  Walking from one place to another, I am slower.  I exert more energy. Because I use support devices,  my hands are not free to carry groceries,  an umbrella, or even a purse. There are alternatives for all of these dilemmas.

I hire someone to assist me with groceries. I use a shoulder strap for carrying a purse. There is no easy answer for the umbrella other than I get wet because I am too stubborn to wear a hat.

People with any type of disability have to become proficient at adapting. Most are excellent planners and are masters of their time.  We give up time to move and function in the world.  What I describe here is not courage.  It is adapting to a circumstance that I do not control.

I have had to become a master at communicating- to relate, advocate, and educate the world. The primary message is always: I am just me.

CP does not define the core of who I am.  I may walk differently but there is nothing wrong with my brain.  The label of CP does not make me spectacular or comparable to an Olympic athlete.

Adapting is not done by choice.  The choices I make are around what kind of life do I wish to have?

I choose to embrace a life of possibility over limitation.

Communities, Belonging and Authentic Inclusion

Regardless of whether a person has a disability or not, we all want to connect.  We all want to have a ‘place’ where we belong. When I refer to the concept of place, I do not mean the bricks and mortar of a building.  I did not join the Fitness Center I go to because of the physical space or equipment.  I joined because from the first day I walked through the door, I was treated as a member of the larger group.

Community in the broadest terms creates a sense of belonging for members of a group.[i]   When you consider it, all of us, regardless of disability, are members of small groups or communities including where we work, where we play, and in general where we live. In the context of inclusion, I am defining community as a place where people are brought together by a common interest. People share values including commitment, mutuality, and expectancy.

As a member of a local Fitness Center, I am an active participant with my peers with and without disabilities. We all go through the Fitness Center doors to workout; improve our health, and overall wellness.

I have read numerous articles about inclusion as a philosophy.  In the articles, inclusion is categorized as people with and without disabilities receiving appropriate supports in a common space.[ii]

Authentic inclusion is not just about space, the built environment, or allowing people through the door. It is not just about people interacting together. Authentic inclusion is a complex dynamic which builds community in a very proactive way.

I have a concept of inclusion that I have applied in my own life. To me, inclusion is active participation in age-appropriate activities.  Inclusion in practice means that I am a part of a larger group, contributing, and interacting with diverse members.  Regardless of the diagnosis of Spastic Cerebral Palsy, I become a member of a community—a larger group with similar goals. Authentic inclusion means I am embraced and accepted based on my contributions in a larger group.

Authentic inclusion means building that sense of community— fostering the idea and the feeling that I, Kerry Wiley, am welcomed and belong in this space, just like every other person.  When Authentic inclusion happens staff and employees at the Fitness Center can serve as the connectors to the other members.

“Kris, I would like you to meet Kerry. Kerry came to us to improve her health and mobility”.  Through a simple, deliberate, and informed introduction, a person can be brought into the mission and the culture, and common practices of the group. 

Over many years  in the local Fitness Center, I have been encouraged by members in this community to achieve defined goals.  I have been encouraged to pick myself up and try again in times of failure.

Authentic inclusion is organic and dynamic.  When it happens, it is not just me on my own anymore.  There was a broader “we”.   People with disabilities in my experience need more opportunities for authentic inclusion—to be a part of a  larger group with similar goals, to be embraced, and contributing.

Tell me, Wiley’s Walk readers, what does Authentic inclusion mean to you?



[i] Crow, G. and Allan, G. (1994) Community Life. An introduction to local social relations, Hemel Hempstead: Harvester Wheatsheaf.

[ii] Place, K., & Hodge, S. R. (2001). Social inclusion of students with physical disabilities in general physical education: A behavioral analysis. Adapted Physical Activity Quarterly, 18(4), 389-404.

This article were 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).

 

Can’t Versus Can: The case for teaching Self-Determination and Self-Sufficiency

There are volumes of literature about the transition to adult life and self-determination for people with disabilities.  An article entitled “Advice from Adults with Physical Disabilities on Fostering Self-Determination during the School Years” sparked some reflections about my own upbringing.

The definition of self-determination that resonated the most for me was from the Teaching Exceptional Children article:

Self Determination is a combination of skills, knowledge, and beliefs that enable a person to engage in goal-directed, self-regulated, autonomous behavior“. 1

Putting aside the academic language and jargon, what does self-determined and goal-directed really mean? Recognizing various differences in culture and families, I think it means learning from modeled behavior regardless of who teaches it.  It means learning and modeling the ethics, conduct, skills, and general behaviors to function and positively interact with family members, peers, friends, educators, and others we meet in school and employment environments, and in the larger community.

Whether I have a disability or not, I had to learn what was acceptable to say or do in a family setting, a school-setting, and a professional setting. The Wiley children learned courtesies of greeting an adult by saying “Hello Mr. or Ms. Smith.” We had structured routines at home.

Specific behaviors were expected at different times. For example, at dinner time you did not talk with your mouth full.  During homework time, homework was done before the television was turned on.  My parents built the foundations of our future by creating structure, teaching limits, and fostering a ‘can versus can’t’ philosophy. That can versus can’t philosophy became critically important in the context of my disability.

Up until the age of 6 or 7, I would frequently ask one of my brothers to go and bring me my canes, backpack, a drink, a snack, or a toy. I  was perfectly capable of walking to get the desired items. Either one of my siblings would initially go and get whatever I requested. For a short time I was lulled into laziness and a false intoxicating sense of power.  I was the older sister.  I enjoyed directing or ordering my brothers to do as I wished.

My brothers initially would do as I asked. It was faster and easier for one of the boys to go and get whatever I wanted. The “go and fetch” routine would soon be broken with a retort of, “Go and get what you want yourself.” My brothers were not paid butlers or servants. My family smartly broke a bad habit that was forming for me.

I was not allowed to use my walking issues for a selfish end. Just because I walked with canes or crutches did not mean I was entitled to special privileges. I was capable of completing and was expected to complete 99 percent of the directives and tasks that were outlined within the Wiley household.

I quickly learned that no one was going to complete tasks for me just because I walked with walking aids. I was expected to do my homework, unload the dishwasher, clean the bathroom, and make my own bed.  My parents set the foundations and expectation of self-sufficiency. If I did not perform an expected task, I lost privileges.

There were other routines established within the Wiley household that instilled and supported self-management skills. We learned the value of education and money early.  For example, half of our weekly allowance was put into a savings account for future college expenses. It was ingrained that the Wiley children would pursue some sort of college degree.

Expectations regarding education, development of vocational skills, and general self-management skills shaped who I would become.  Disability would not be an excuse for why I would not accomplish a task or a goal.

The foundations of self-determination really begin when a positive “can do” philosophy is cultivated and modeled. My parents modeled positive behavior and expected certain behavior for all of their children. Whether a person is a parent, caregiver, or teacher, instilling structure, limits, and guiding choice is what self-determined and goal directed is really about.

Self Determination Resources:

Developed by the Virginia Department of Education, the I am Determined website provides  videos, activities, checklists,
and assessments focused on providing self-determination skills and training to youth.

www.iamdetermined.org

The Pennsylvania Youth Leadership Network (PYLN) developed a Secondary Transition Toolkit.  The toolkit was created by youth with disabilities to help youth in their transition into the adult world.  The toolkit includes  personal stories, information, and activities to help youth in transition take charge of their lives.

http://pyln.org/

  1. Angell, Maureen E.; Stoner, Julia B.; Fulk, Barbara M. (January-February 2010). “Advice From Adults With Physical Disabilities on Fostering Self-Determination During the School Years.” TEACHING Exceptional Children, v42 n3 p64-75.

Challenge by Choice: Inclusion through Project Adventure

Back in 2011, I was walking to get my lunch and passed a young child whose face creased, turned into a scowl, and then the unmistakable question mark appeared. I caught the once over stare as they pulled on their caregiver’s sleeve. I kept walking and heard the audible question; “Why does that lady walk like that?”

The woman tried to quiet the child and move them along. As the distance grew between us; I heard the child’s fading question – “But why does she walk like that and use the sticks?”

The “Why does she walk like that?” or “Why does she do that?” question is an inquiry that I have grown to expect since I have Spastic Cerebral Palsy (CP).  Between the ages of 10 and 13, I received the same types of stares and reactions from my classmates.  My job was to make my peers see me beyond the walking devices.

The concept of inclusion (age appropriate participation with peers) is a concept that been grandfathered into schools and the community over the last several years. I had the fortune of being included before inclusion was a trend.

During my middle school and high school years, I took part in “regular” physical education classes with my peers. I was involved in almost every skill drill, game, and other activity. I never allowed myself to be separated or pulled aside.

Adaptions were introduced only when they were needed. This often translated into a student shadowing me in volleyball or other similar game so that I would not get hit in the face with the ball because I had one hand occupied. I needed to have at least one crutch to maintain balance.

The middle school I attended a ten-week “Project Adventure” course each year. “Project Adventure began as an adventure-based physical education program at a high school in Massachusetts in 1971.” [i]

In 1986, the program was introduced in the middle school I attended. I along with 25 other students in the class learned how to use a belay to ensure a safe and controlled descent in a climb. We learned about tying various climbing knots such as the single loop and double loop knot, and other needed components for a novice climb.

Once mastery of the belay and various knots were achieved, we were challenged to climb a rock wall which then advanced to climbing and descending a second story building. The presented “Building Challenge” included a climb to the top of the school building and then jumping to descend down a zip line.

Outfitted in helmets and our climbing gear, each student proceeded to climb a ladder to end up approximately 20 feet off the ground. Before the climb would proceed, students were reminded of their “full value contract” and of the “Challenge by Choice” principle. [ii]

Each student verbally agreed to a contract which outlined expected behavior and the general values of Project Adventure including choice, teamwork, support, respect, and positive reinforcement. Specific rules and verbal cues for the climb were reviewed and students began the ascent.

My turn came to climb. The most difficult aspect of the challenge for me was going to be the ascent to get to the top of the building. The stiffness in my legs from the CP would make it difficult to climb the ladder steps. My knees would not bend enough for my feet to land directly on the ladder step. Knowing about my flexibility challenges, one of my physical education teachers was poised on the ladder behind me. I would use my upper body strength to lift myself as far and as high as I could and the teacher would manually assist me to raise my legs higher and place my feet on the steps.

I needed the physical assistance to make it to the top. Prior to the climb, my classmates asked “Why is she doing this?” The Teacher’s reply back was, “This is about choice and support.” Students were reminded about their contract and about the “Challenge Model”. The premise of the model is that a student is willing to push beyond their perceived limit in a safe way.

In our Project Adventure contract, students agreed to:
1. Adhere to safety rules and guidelines as delineated by the teacher;
2. Engage in positive behavior, leadership, and sportsmanship; and
3. Engage in “Challenge by Choice”, that is, the participant choses if they will take part in an activity and challenge and how much they will take part in an activity. [iii]

The Challenge by Choice principle underscored my experience with Project Adventure.  As I jumped off the second story building and began to glide down the zip line, I felt like I was flying because I had accomplished what I had set out to do.

After more than 20 years, I still say this school-based program enhanced the development of my self-belief that I could take part in anything. It enhanced my personal autonomy and decision-making. I made the choice to conquer an obstacle and the choice to climb the ladder and jump become much more than the task.

The program also gave me another unique setting to fully participate with my peers. My Physical Education teachers recognized my desire to be included. They orchestrated the strategy to include me. I just needed manual support to assist me to bridge the distance between the ladder rungs and where my legs would land.

[i] http://www.pa.org/
[ii] http://www.pa.org/
[iii] http://www.pa.org/

This article were originally published in 2011 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 Roadrunner – A Famous Bird and A Memorable Race

The roadrunner is a bird made famous by its name and ability to run up to 20 miles per hour. While the Roadrunner can fly, it stays mostly on the ground. A roadrunner has long, wobbly legs and is often seen as both solitary and unique. There are relevant comparisons between me and the roadrunner. In some ways my experience of disability is solitary and unique. By choice or by circumstance I have had to forge my own path.

The Roadrunner is also the name for several races held throughout the country. One was held each year at my high school. I ran the race almost every year I attended school. There was never any question that I was going to run. The definition of my running might vary depending on the spectator. My running is the combination of foot drag, hiking my hip forward to step, and using my arms to propel.

I’m not the type to shy away from competition. Students from every grade level were required to run up and down grass covered inclines. The distance was a mile. Your speed was timed. Since this was a competition, there was a starting line and a finish line. Running the mile course was a requirement for physical education class. Students were trained to run in an actual race.

I have recollections of four physical education teachers and coaches in their track jackets standing by the starting line and finish line. A big score board-size clock counted down the minutes and seconds. My “run” was as fast of a walk as I could muster. The steps were not a sprinter’s run but a combination of legs and arms.

Since I drag my feet, my sneakers and the bottoms of my pant legs would be covered in mud. Twenty-five other students would run with faster times. My goal was not to get the fastest time. My goal was to finish. There were times when I wanted to be like the roadrunner and run as fast as twenty miles per hour. Running the mile would take me an average of forty minutes from the start to the end.

During the training process, students would run just to get the job done and over with. When my feet touched the ground, I would focus on the green and brown terrain ahead of me. I knew what my base run time was and I was determined to beat it and finish. Despite speed improvements, I would always be the last student to cross the finish line. Training for the race happened over the course of several weeks.

The day of the race I remember that the leaves were starting to change. It was chilly. This time in place of students running or observing on the side line, there were more than 100 people present — masses of kids and adults– runners and spectators combined.

Our coaches and teachers took their place by the start and finish line. The runners took their positions. A horn sounded signaling the start of the race. Like the other runners, I found my rhythm and pace. Up and down hills I went, but instead of the usual quiet, the teachers that were positioned at the start line, were suddenly with me.

I kept moving. My arms moved forward and back like the motion of a skier. My feet and canes carried me across the hilly terrain. I heard “You can do this.” “Keep going.” I reached the halfway point. The teachers didn’t leave me.

All I saw were the brown and green colors of the grass and the slope of the hills as my feet carried me closer to the finish line. My shoes and pant legs were covered with mud, just like every other practice session, and my face and clothes were drenched with perspiration.

The one or two teachers that joined me in the race didn’t seem to see any of that. I didn’t see it. I was just aware of the motion of my body and the desire to cross the finish line.

As I rounded the last bend in the race, the crowd of adults, students and spectators erupted into noise. One of my coaches was egging on the crowd, causing them to get louder. I heard clapping, cheering, and the same encouragement that my teachers were filling my ears with – “You can do it. Go, go, go!” The people who followed me over the course, on the grassy terrain, left me to finish the race. “The last steps are yours!” was their farewell to me as I took the final steps to finish.

I saw that clock with the minutes and seconds. The faces of the people on the sidelines finally came into focus for me. The shouting, the clapping, and cheering did not stop. I finished that mile and it was my best time. Somehow in the harmony of the noise, the time did not matter. I finished. The four teachers who supported me in training for the race came over to offer their congratulations; some people slapped my shoulder or hugged me.

On that day of the Roadrunner race, I discovered what it felt like to be a part of a team. The running that was a cross between a walk and dry land skiing did not matter. Sportsmanship, partnership, and finishing are what I remember the most about that chilly autumn day. Sometimes I can still hear my coaches, saying “You can do it. Go! Go! Go!” and it drives me toward accomplishment. I internalized the outcomes of that race. I wish every student with or without a disability could recognize their own unique and solitary qualities and experience their own Roadrunner race.

This article were originally published in 2011 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).

An Invisible Separateness

Our culture has introduced the idea of inclusion (age appropriate participation with our peers) for years. Laws support it, schools teach it, and many advocates work tirelessly to bring the concept of disability awareness, inclusion, and participation into schools, workplaces, and general communities.

Despite concrete and respectable efforts, access and inclusion still do not necessarily go hand in hand. I may have access to a facility; however it does not mean that I am made to feel welcome, included, or even that I am considered a patron. I have had more than one occasion where health and service providers have said “We don’t serve people like you.”

My walking devices are a visible marker of disability. The devices that support me to move and walk can place me in a category of “other”. Especially when I was younger, the devices put me in a separate but not equal scenario with my peers.

True inclusion in concept creates a culture of belonging. Inclusion certainly begins with physical and architectural access, (e.g. having ramps, flat surfaces, and doors that are easy to open), yet true inclusion by my definition means I am in the middle of the action. That is, directly involved, in the recreation and leisure activities, participating.

Being present but not equal is not acceptable to me. I want to go into a recreation and leisure facility, where I am able to participate and where I see and interact with a mix of young people, professionals, and seniors. The set-up is not one of fixed ratios but one that encourages interaction, playing, and taking part in whatever a person chooses.

In my youth, the venues for inclusion were the lunchroom or gym classes. Even though I was involved, or took steps to ensure my active participation, I often remember eating lunch alone because I did not know how to relate well to my peers and / or they did not know how to relate well to me.

More than twenty years later, I have witnessed youth with disabilities in more than one venue still sitting by themselves as their peers socialize around them. Placement in a physical setting or situation does not mean interaction happens.

By the time I reach my 60’s I would love to see a culture shift, where I am the patron before the diagnosis. I would love to see an end to categorical terms like “the disabled”, which makes me feel like I should belong to a herd of cattle.

Our culture has created varying levels of access but has also created a phenomenon of invisible separateness for people with disabilities. While trends are changing, we still have ratios that identify a specific number of youth with disabilities that should be paired with a specific number of youth without disabilities, we continue to have specialized programs, and people who are challenged by differences. How can we move beyond the invisible separateness that continues to exist to create cultures of true inclusion?

This article were originally published in 2011 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).