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).

Black and Blue

I started to become aware of the existence of my disability through the stares and general lack of awareness of other people around the age of four. I did not feel different.   I was just a girl who liked long dresses and the color blue.  Other people were aware of my walking differences before I was.

People saw my metal walking braces and crutches as some kind of brand that made me different.  I grew to hate the repetitious clicking sounds from the braces, metal that rubbed on metal every time I took a step.

I really loved long and flowing dresses.  I loved to spin and twirl and watch the material of the dress cast around me.  The dresses also hid the metal braces that I grew to hate.  The devices that supported me to move became a brand that made me different.

People with disabilities are isolated in many contexts –from their peers and from their community due to a lack of awareness about disabilities, lack of access, and a number of other well-documented factors.  I was speaking with a friend of mine who is a trained Certified Therapeutic Recreation Specialist.  We talked about disability awareness.

Disability awareness is not about being an expert on diagnostic criteria for a particular disability.  It is not about being politically correct or using the terms or descriptors of the moment to describe disabilities.

My friend raised the idea that people have not grasped the concept of people-first.  In my case, I would rather be thought of as a writer or liking the color blue before being identified by disability criteria.

Somewhere in the process of sensitizing people, we have missed it.  People with disabilities do have struggles.  People with disabilities experience pain but that there is a difference between pain – the physical experience of pain and the mental experience of pain compared to pity.
People with disabilities do not want to be pitied.

Somewhere in the process of sensitizing people, we, (parents, teachers, health professionals, service providers, policymakers etc.) collectively have missed something.

There was a time growing up where I did not feel different, but grew to hate tools that help me navigate the world.  When I was Senior in High school I wrote a poem about the experience of my disability – entitled
Black and Blue.

There is something mysterious and enigmatic about poetry.   It is subjective and the reader is left to draw their own conclusions.  I resurrected Black and Blue and it makes the same point as it did years before, but with more complexity-

Black and Blue
Cross legged in the dark
The grip is tight,
A lump rises staring at the missing eye.

Fingers dare not touch the stained flesh
Faces turn behind.
The air,
Clammy,
False from pretense
Turn around.
Ignore the corner,
The missing eye
The twisted leg,
Fingers dare not touch the same flesh.

Cross legged in the dark,
Surroundings are strange.
Tainted is the flesh,
Broken,
Black and blue
Reality is weak compared to illusion.

In the corner,
Staring out of the missing eye
Is there a void?
Black is black,
Look again.
Turn around.
Blue is blue.

The fingers are cold
The flesh is charred and broken
Cross legged,
Alone and weak
Faces turn behind.
Missing eye
Twisted leg
Fingers dare not touch the same flesh.

Disability awareness is about taking the time to see the writer, the athlete, and the person as a whole. Person-first means seeing the writer and the athlete before the disabling condition.

I would like to re-visit the girl who loved to twirl in the long skirts to say I see what you will become and it has nothing to do with the braces.   Black and blue should be colors on fabric, not bruises left by ignorance.

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).

Beyond Disability and Disability Awareness

I have read too many articles that feature a story about an individual with a disability who has not been served or who has been turned away from a gym or some other public facility because staff did not know how to provide for or accommodate the need of the individual.  For the purposes of this article, accommodation is defined as “adjustments or modifications that enable an individual with a disability or various disabilities to fully participate.” 1.

Recently, I read an article called  “Woonsocket Gym manager’s feat of kindness goes viral”. The article relayed a story about a man with a disability named Wagner.  Wagner was going to work out with a family member at a local gym in Rhode Island.  He had worn boots instead of sneakers. Because of the improper footwear, the pair was going to leave the facility early.  The gym manager learned that Wagner had forgotten his sneakers.  In response, he sent other staff from the gym to the nearby sports store to purchase a pair of sneakers for Wagner.

The story is certainly a feel-good story. However, the article got me thinking again about disability, disability awareness, accommodation, and competency.  Our Health, Disability, Fitness, and many other fields need to promote a different framework and mindset related to disability, disability awareness, accommodation, inclusion and participation.

Training on the topic of disability and disability awareness needs to broaden beyond the characteristics of various disabilities and developing disability awareness and sensitivity.  The framework needs to evolve to a scheme that addresses accommodation in practical terms.  This includes teaching professionals to  provide a range of adjustments and modifications in a practical way that allow an individual with a disability to fully participate with their peers in a gym or other similar setting.  

Professionals need to learn  what I will call disability competencies such as  effectively communicating with people with disabilities, understanding the needs of people with disabilities, and identifying and effectively using a range of strategies to accommodate individual needs.

When I researched this topic and elements of disability awareness training, literature identifies specific stages of training.  Stage one of training includes “exposure” and introducing  information about various disabilities or disability characteristics.

Stage two includes experiential learning which consists of direct interactions with individuals with disabilities.  The interaction includes an assessment of what a person with a disability needs.  The individual and professional work together to identify the accommodation or accommodations that will allow the individual to fully participate. 

An example of an accommodation  might include providing a chair so that a person can participate while seated.  The overall goal is to make information, materials, and equipment accessible and usable for the person to participate.

Stage three includes the strategy or implementation phase.  From an assessment, for example, a professional might identify that a person with a disability needs a sticky mat to help maintain their body alignment and posture.  The professional would select the appropriate sticky mat based upon the thickness of the mat, the texture of the mat, and the level of stickiness of the mat.

Ownership is the culmination of  exposure, experiential learning, the assessment, and application of the accommodation.   In the proposed framework, the professional “owns” the  problem-solving process by working directly with the individual and ensuing the identified accommodation is successful.  That is, from the accommodation provided, the individual with a disability is able to participate effectively with their peers.

In the expanded framework I am proposing, professionals need to be taught hands-on strategies to:
1. Effectively interact with individuals with disabilities,
2. Effectively assess and identify potential and practical  accommodations, and
3. Effectively implement accommodations and related
supports for individuals with a variety of disabilities.

While disability awareness and sensitivity training is critical, available  training also needs to include identified principles and competencies across multiple sectors and disciplines.

For additional reading: see: Fitness Centers still lack accessibility for people with disabilities.

Suggested Resources include: The National Center on Disability, Health, and Physical Activity.

  1. The definition of accommodation is adapted from the Employer Assistance and Resource Network on Disability Inclusion.

Excerpts of 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).

 

 

Disability Awareness is not about simulations, it is about taking a bus

Perceptions and attitudes about people with disabilities are one of the most difficult challenges that people with disabilities face. I was as young as 5 years old when I recognized and observed that people treated me differently. I noticed it in their facial expressions, general body language and even in the words they chose. Very early, I learned to encourage and respond to questions about “What happened?” and “Why do you walk like that?”

I came to quickly understand how I acted and reacted set the tone for future interactions that would happen for other people with disabilities. I have chosen to address most questions directly. For a young child who asks “Why do you use those”, (referring to the walking poles), my response is simple. “They help me to walk.”  For adults the answer is, “I was born this way.” This statement often leads to more in-depth conversation. My end goal in having this kind of conversation with anyone is to increase exposure, sensitivity, and awareness. If I have been remotely successful in achieving the goal, that conversation starts to close a gap in knowledge that exists.  In my experience, perceptions and biases about disabilities and people with disabilities are hard to alter.

I am wary about disability simulation exercises that are often used to try to educate people without disabilities about the disability experience.  Examples of these exercises might include tying one arm behind a person’s back for a day, using a mobility aid for a day, or wearing a blindfold for a day.  These exercises are used in a range of fields including health care. The goal of disability simulation exercises in my mind has a respectable aim. The intent is to imbue recognition of bias, stigma, and support the development of sensitivity and empathy.

Research has shown that disability simulation exercises can result in a range of responses from participants without disabilities including stirring up feelings of pity, feeling sorry for a person with a disability, and wondering how they function independently in their home and community.1   Alternatively, the simulation exercises can bring about genuine recognition about systems barriers that exist for people with disabilities such as a lack of accessibility.2

The biggest concern and problem that I have with disability simulation exercises  is that they are time-limited and temporary.  I think of these simulation exercises like breaking a bone.  When you break a bone, the bone gets reset and you are put in a cast or splint to immobilize the limb affected. Six to eight weeks later the cast or splint is removed, the bone is fully healed, and life resumes.  My fear and concern about disability simulation is when the exercise is over, do elements of empathy and awareness that we want to teach and integrate fade over time?

Before I started writing this piece, I thought about experiences that increase disability awareness in terms of helping a person without a disability start to develop a sense of barriers that  people with disabilities face. One example I recalled was when my Grandmother came to visit me in the middle of winter over ten years ago. She was in her eighties at the time. She and I had to take the public bus system to get groceries, to go shopping, and navigate the city I live in. My Grandmother had not taken the bus to get anywhere in over 40 years.

It was very cold and snowing slightly on the day of our errands. She was not prepared for the 30- to 40-minute wait for the bus. She had to wrap her scarf around her head for warmth. She grew colder as the minutes passed. She commented in an annoyed tone that the length of time we had to wait for the bus was unacceptable. Once the bus arrived and we were in route, she commented on the frequency of stops that averaged every ¼ of a mile.

When we had purchased our grocery items and were back on the bus, I sat in the only open seat available. My Grandmother had to stand. She had multiple grocery bags in her hands was a bit wobbly from trying to maintain her balance in the moving bus. She did not like how crowded and noisy the bus became. She did not like having to stand while the bus made multiple stops.

At the conclusion of the trip, she said that she was glad that she never had to go through the experience again. I did not comment at first. I was carefully considering my response. I decided to ask a question:

“Grandma, can you imagine only being able to catch a bus one time per day to get around town if at all? You had trouble standing up while the bus was in motion with grocery bags. Do you have a better sense of what it is like for me?” Our walk home was very quiet. I knew my Grandmother was contemplating the scenarios I presented.

From our bus experiences, my Grandmother developed a new sense of awareness. She had gained some sense of the challenges that people with disabilities can face with transportation. She was exposed to some of the gaps in services that exist. She was exposed to a lack of access that she was not accustomed to. In place of disability simulations, I would suggest an extended learning experience between a person without a disability and a person with a disability.

 My Grandmother was immersed in my daily tasks and experiences for 48 hours. She had to access the same resources I did. She had to experience the extended wait times and challenges when the ride we were counting on did not appear.

First-hand experience is an invaluable tool to increase awareness  and empathy. The increase in awareness and empathy that I have described here was not about Spastic Cerebral Palsy as a condition. The “a-ha moment” and understanding came when my Grandmother and I took the bus.

1. McKenney, A. (2018). Attitude Changes Following Participation in Disability Simulation Activities. Therapeutic Recreation Journal, 52(3), 215+.

2. McKenney, A. (2018). Attitude Changes Following Participation in Disability Simulation Activities. Therapeutic Recreation Journal, 52(3), 215+.

Bullying Prevention

I turned on the television recently and watched yet another story about a person with a disability being bullied, victimized, and hurt.  As I watched the story, I thought about times in middle school where I too was bullied. 

StopBullying.org defines bullying as “as unwanted, aggressive behavior, among school age children that involves a real or perceived power imbalance.  The behavior is repeated, or has the potential to be repeated, over time.”   

Even though over thirty years have passed, I remember having a group of my peers repeatedly kick or knock my walking devices out of my hands.  All I was doing was walking to class …  As my walking  devices fell,  I fell.  If I was lucky I would land on my knees.  Other times my body would land on the floor with a thud. 

As I worked to get up, the bullying crew would erupt into laughter… The laughter would echo through the hallway as they retreated.  The crew had to beat the late bell and the Hall Monitor.  If they were seen with me, someone might figure out  what happened.  

There were many occasions where I had black and blue marks from those falls.  However, it was not just the bruises that hurt.  I moved differently.  Because of this I was more vulnerable to bullying.  I did not want to bullied or to be a victim. 

My response to the incidents of bullying was to try to educate and change the minds of my peers.  I would approach my parents, middle school teachers, and physical therapists to support me to educate my classmates about my disability.

In practice, it frequently meant having my classmates sitting around me while my physical therapist would sit beside me and we would explain the  concepts of Spastic Cerebral Palsy, its prevalence, and overall effects.  My physical therapist would assist me to explain how the CP effected my movement and why I could not maintain balance. 

The incidents of bullying lessened as I got older.  However,  the reality was I was treated differently because of inaccurate beliefs,  perceptions,  and judgements  from a visible difference – my walking  devices. 

What is troubling to me now is bullying and victimization has grown in its prevalence and forms.  Research continues to demonstrate that students with disabilities are bullied and victimized at a significantly higher rate than students without disabilities.1 

Research shows the following:

a) compared  to students without disabilities, students with intellectual disabilities are 2 to 3 times more likely to be bullied and  victimized, and

b) students with observable disabilities are 2 to 4 times more likely to be victimized. 2

Thinking back, when I would hold those sessions to educate my classmates, I was attempting to infuse the concepts of inclusion, diversity, and respect for difference in the minds of my peers. 

Stories like the one I just watched on television tell me that there is still a lot of work to do to imbue these concepts in our classrooms and other environments.  My solace in writing this piece is that there are many bullying prevention and disability awareness initiatives underway such as:

1.Rose, C. A., Stormont, M., Wang, Z., Simpson, C. G., Preast, J. L., & Green, A. L. (2015, December). Bullying and students with disabilities: examination of disability status and educational placement. School Psychology Review, 44(4), 425+.

2.Rose, C. A., Stormont, M., Wang, Z., Simpson, C. G., Preast, J. L., & Green, A. L. (2015, December). Bullying and students with disabilities: examination of disability status and educational placement. School Psychology Review, 44(4), 425+.

Change Transitions

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

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

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

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

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

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

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

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

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

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

a) what my goals are,

b) what I need to accomplish my goals,

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

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

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

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

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

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

Reflections about a Mustard Seed

I wrote this piece about five years ago and I am resurrecting it tonight because of its relevance to what I feel right now. I had read an article called the “Struggle for Faith”. The author suggested that “unless we are content to be intellectually, logically, and spiritually static, we must move in new directions, open up new avenues, and remain discontent (and restless) with what we presently know.”[i]

My walking journey represents the essence of not being static. I am constantly trying to move in new directions and open up new avenues. The avenue that I did not expect to open up is one of faith and spiritual growth.

For the purposes of this article, l define faith as “the conviction of things not seen”. This concept comes out of the Bible, Hebrews 11:3. I have read that “Spiritual development is dynamic and dialectical, that is, the art and practice of arriving at the truth through an exchange of logical arguments.[ii]

What is clear to me is that spiritual development is not linear and it does not necessarily result from logical arguments. My endeavor to walk device-free has evolved into preserving mobility. It has been a process of seeking and dwelling in sometimes if not frequent uncomfortable spaces.

In August of  2014, I wrote about one of those “uncomfortable spaces”. It was early on a Wednesday morning, I stared at my alarm clock and watched as the numbers changed from 12:00 AM to 1:15 AM. My body ached from the base of my shoulders to the bottoms of my feet. I was feeling the physical effects from my last training session.

At least twice a week, I train. The aftermath from a training session and the effect from new techniques we use can be prolonged. I have learned over time to expect the ache I was feeling in my upper and lower limbs.

I was also experiencing the effects of tactile hyper-sensitivity. When objects such as cloth or fabric come into contact with a person’s skin in a state of hyper-sensitivity, it can cause intense physical discomfort.  I have explained tactile hyper-sensitivity to others using the analogy of a shirt tag scratching a person’s skin. We’ve all had shirt tags that have scratched us between the neck and shoulder blades. Imagine not being able to remove the tag and having that scratching sensation travel up and down your back, arms, and legs and not stop.

As a child I heard sermons and stories about having faith, even if the belief and conviction is the size of a mustard seed. I have had to revisit the reference and analogy of the mustard seed many times.

A review of biblical and theological literature describes the mustard seed as the smallest of seeds. [iii] In one writer’s interpretation, the seed represents “small beginnings” compared to the “greatness of result”. [iv]

The author explains “The small seed of the present does not represent avenues of growth, development, or the final result.”[v]

Wiley’s Walk, my blog, and sharing this journey is about the growth and maintenance of my own ‘mustard seed’.

[i] Singarayar, J. (2014). The Struggle for Faith. Priest, 70(8), 23-24.

[ii] Sandage, S. J., Jankowski, P. J., & Link, D. C. (2010). QUEST AND SPIRITUAL DEVELOPMENT MODERATED BY SPIRITUAL TRANSFORMATION. Journal Of Psychology & Theology, 38(1), 15-31.

[iii] Harrington, D. J. (2008). Mustard, Wheat and Weeds. America, 199(1), 31.

[iv] Harrington, D. J. (2008). Mustard, Wheat and Weeds. America, 199(1), 31.

[v] Harrington, D. J. (2008). Mustard, Wheat and Weeds. America, 199(1), 31.

Portions of 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).

Questions and Skates

 

People frequently ask me questions about my disability.

I am asked:

“Can I ask you what happened?”

“Why do you walk with ski poles?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Unexpected Phone Call

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

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

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

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

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

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

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

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

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

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

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

The follow-up tests came back negative.

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

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

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

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