Month: March 2018

 

Our current health systems, while gradually changing, have taught numerous professionals in my opinion, to think in boxes, to categorize by labels and diagnosis rather than look at the sum of the whole.

As a child, I remember hearing very technical and medical terms like “Spastic Diplegia” (the type of Cerebral Palsy that generally affects both legs) or “Spasticity” (involuntary movement which can include stiffening of muscles).

I knew that I was the subject of discussion but did not understand what was being said. All I knew was people were touching me, prodding me, tapping me with instruments to test reflexes and other functions and the results ended up being written in folders with my name on it. I felt like a science experiment.

Over the years, I have encountered various types of work styles with professionals including:

 – Professional 1: TheExplorer/Scientist/Mechanic

“Kerry’s Hamstrings don’t work…Her hamstrings and gastrocnemius muscles are tight. Kerry is the experiment/project in the room – What can “we” do to get her to be like the image of function we know? What can we do to “correct” the anomaly?”

- Professional 2: The Realist

“What is, is…She has x and y capability…that is all there is. Maintaining function is the ‘best’ that can be gained.”

- Professional 3: The Drill Sergeant

“We have a set program for Kerry; we are going to push her. She is going to achieve the defined goal.”

 – Professional 4: TheMaverick

The Maverick is the out-of-the-box thinker that recognizes the need for a different lens and has the willingness and ability to try different approaches to accomplish what needs to be accomplished.

All of these work styles illustrate a varying level of expertise, comfort level, and awareness. In each case, it creates a role where I must be a student and a teacher to level the playing field. I often sat on the treatment mat or table watching while discussions were occurring about me, feeling isolated, very small, and compartmentalized.

I remember feelings of wanting to escape or run away. It did not matter how big the room was. I was not restricted but I felt boxed in. I would become quite distressed because I did not know how to say at the time that I was not an object, a subject in a box or experiment to be studied. I was there. I was sitting in the room and had a very clear perception of events.

Those feelings of vulnerability were a driving force that caused me to become a skilled student about all aspects of my disability. I learned everything that I could about Spastic Cerebral Palsy. I had to learn to be constructively vocal and learn to ask questions in the right way. I had to learn the same terms, learn about the therapies, and protocols just like the professionals did to establish productive working relationships with them. I learned that I was choreographing an intensive and dynamic relationship with the professionals, and nothing about it was standard or routine.

A good teacher sets high expectations for achievement; they provide the vision, knowledge, and a plan to move ahead.  When I work with a new professional, I am looking for certain qualities.  Are they a Maverick… the out- of- the box thinker that recognizes the need for a different lens when dealing with a disability?  Do they have a willingness and a level of skill to try different approaches?  Do they have patience, confidence, and an ability to provide direction?

In turn, I try to display the qualities of a good student—that I am focused, set goals, am confident, and that I have a positive attitude and am open to direction.  A good student prepares, is not afraid to ask questions, is respectful, and is always on time.  I switch between a teacher and a student role.    When I work with professionals, I have to become knowledgeable about specific therapeutic techniques and what should be occurring with those prescribed methods.  I have to learn to keep pace with each professional based on their training, practice, and protocols.

Initially the new professional and I are not on equal footing.

I often have to challenge academic teaching, theories, and what the person has read or heard about Cerebral Palsy.  There can be a tug- of- war between what the textbook says compared to what professional sees when they work with me.  I often have to teach, encourage, and give confidence to the professional to trust me and what I share about the “in the skin” experience with my disability.

I have to show the professional that I am the master of my own body and clearly know what my strengths and weaknesses are. I have had to learn how to fine-tune how I engage with professionals.  This includes how I relay and share information.  I have learned to use different vocabulary and communication styles; sometimes my methods are short and to the point or are very detailed.  I had to learn when to be forceful and when to be calm about my wishes and when to clearly steer my treatment direction.

I have had to become a skilled facilitator.  Becoming an effective facilitator is a mix of several skills including listening to information that is conveyed by the professional, listening to instruction and repeating the information back to be clear, asking questions, and being able to put into words what happens when a particular technique is tried.

As we train new professionals coming into the Health and Fitness fields, we need to instill more Maverick-type qualities; seeing the person absent the diagnosis and moving beyond the box.

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 came across an old photograph from 1979. In the picture, I am lying across a therapy ball that is about four times my size. My Dad is swaying me back and forth on the ball, performing my nightly stretching exercises. The exercises were designed to keep my leg muscles loose and pliable.

When I look at that picture, I see a happy kid not yet overwhelmed by notions of disparity, difference, or concepts of disability. In that picture the concepts of etiology (causes of a condition), diagnosis,  and disease were foreign to me. I was just “exercising” and hanging out with my Dad.

While all of these medical –oriented notions like etiology have their place, I am frequently reminded of the incongruence of these concepts and the idea that people come first, especially in program design and implementation. A recent session with my trainer brought the “people factor” notably back into focus for me.

My trainer asked one of his colleagues to work with their client in another location of the fitness center. The room that we would be working in was warmer. My trainer knew my muscles would be more pliable and would respond better in the warmer temperature.

They also knew that I would be less distracted from the music playing on the main floor coupled with the bustle of other the patrons. The request to have their colleague move locations gave me the space, quiet, and poise to work through the new nuances of my routine.

My trainer once said “People are my business”.

What does that mean in practice? My trainer is aware of factors which impact my performance outside my diagnosis and the etiology of my disability. They make specific efforts to remove elements such as cold, restricted space, and distraction which might impact and complicate my participation, movement, or access.

The introduction of more space and quiet space assists me if I respond unexpectedly to a new exercise method (e.g. have a limb go spastic, rigid, or spasm). The extra space can also remove feelings of self-consciousness and the sense of spectacle that can result if a lot of people are around and something goes awry while implementing an exercise.

The “people factor” as described here infuses consideration, dignity, and respect of an individual into the formation and implementation of a health, fitness, or exercise plan. In our existing health and disability fields, people not diagnosis in my view, should be our first and most important business.

This article was originally published on March 14, 2012, 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 define accommodation as any change that helps a person overcome or work around their disability. The change can be physical (e.g. moving to a different location, making additional space, or moving furniture or equipment to clear an aisle). The change can also be programmatic (e.g. giving a person more time or providing equipment to assist in task completion). In the context of fitness environments, accommodation can mean moving activities to a different room or moving portable equipment like mats, balls, hand weights, etc. out of an aisle. Programmatically, accommodation can mean allowing a person to work 1:1 with professional or using adapted equipment (e.g. a ball with audible bells, guide ropes for running, or larger equipment).

Within this piece, I am not addressing legal requirements for accommodations, accessibility, or similar mandates. I am raising opinions and considerations about practical accommodations and requests.  As a person with visible walking issues, more than anything I just want to fit in with my colleagues, co-workers, and peers in any and all environments. I recently attended a class which was held in a three story building with no elevator.

I wrestled with the question before physically attending the class, “Do I announce myself and the presence of my walking issues?” I wanted to participate in the class and activities without my walking issues being excessively highlighted, put in a spotlight, or over-emphasized. When I disclose my walking issues or a need for an accommodation, a spotlight frequently can be turned on which screams “Kerry has needs which are not typical of others”.

This issue of accommodation and when to raise it can be difficult. When does a person remain silent and when does one speak up about their accommodation needs? The considerations and meter that I use for accommodation requests are:

◦When does the request interfere with general business?
◦When does the request interfere with the needs or activities of other people?
◦Does the request create a circumstance which over-isolates me or embarrassingly singles me out?

I advocate for accommodations when the request does not require extraordinary measures. If what I am asking for is something simple like moving equipment out of an aisle, I will work with and/or repeatedly raise the issue with appropriate personnel to get the equipment moved. I also try to make sure the change I am asking for will benefit more than one person.

In the case of the new class, I made the decision to acquaint with myself with the instructor. I introduced myself by phone, inquired about the class structure, and I inserted the following statement in my conversation. “By the way, you need to know that I walk with walking poles, and that I intend to join this class.”

There is a slight pause. The instructor said, “We currently hold the class in a room that would require you to walk up three flights of stairs.” I could hear the silent dialog happening in their head.

“What kind of accommodations will this woman need?”

I replied, “I am able to climb up and down stairs, but can have difficulty.”

The instructor continued, “We would be happy to explore getting an alternate room.” It was refreshing to not have the “disability spotlight” flashed on me.

In the exchange:
◦Disclosure of my walking issues had to happen to make my needs known.
◦A willingness existed on the part of the instructor to change the class location once my difficulty was known.
◦A physical adjustment to space was made which would allow me to fully participate with my peers.

I hope more people with disabilities can have encounters like the one I had with this instructor.  I also hope that professionals can be inspired by my encounter and see that providing an accommodation can be simple, reasonable, and feasible and can be done without the “disability spotlight”.

This article was originally published on March 12, 2012,  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).