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+.