Author: kwiley

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).

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).

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).

 

 

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:

•  StopBullying.org
• Pacer Bullying Prevention
• Friends Who Care

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+.

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

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

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

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

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

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

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

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

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

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

a) what my goals are,

b) what I need to accomplish my goals,

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

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

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

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

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

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

 

People frequently ask me questions about my disability.

I am asked:

“Can I ask you what happened?”

“Why do you walk with ski poles?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The follow-up tests came back negative.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This article was originally published in the “Endless CapABILITIES Blog”, and National Center on Health, Physical Activity and Disability, sponsored by The National Center on Health, Physical Activity and Disability (www.nchpad.org). NCHPAD is part of the UAB/Lakeshore Research Collaborative and supported by Grant/Cooperative Agreement Number U59DD000906 from the Centers for Disease Control and Prevention (CDC).

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

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

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

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

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

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

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

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

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

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

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

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