‘Private Practice’ star and advocate for children with disabilities,

Brenneman to keynote 2012 TASH Conference in Long Beach, Calif.

WASHINGTON (April 2, 2012) – TASH, a nonprofit advocate for inclusion and human rights of persons with significant disabilities, announces actress Amy Brenneman will be among keynote speakers during the 2012 TASH Conference in Long Beach, Calif., November 28-December 1, 2012.

Brenneman, best known for her performances in a number of notable television series, including her current role as Violet in the ABC series Private Practice, will be speaking to attendees of the TASH Conference as a parent and an advocate for children with disabilities. Brenneman has been an important voice against segregated models of education and has promoted fully inclusive schools, such as CHIME Institute in Woodland Hills, Calif., where her children attend.

The TASH Conference annually attracts more than a thousand members and supporters of the disability community to learn, grow and advance human rights and inclusion. TASH, whose work over the past 37 years has significantly advanced inclusive education around the nation, believes Brenneman’s public standing and tenacious advocacy will help build inclusive communities in which everyone is welcomed and respected.

“Having just produced an event for the fabulous CHIME Institute where my children attend, I am ever more committed to providing an inclusive education for every child. The research shows that children with and without disabilities thrive when educated together, and serves as a model for the community at-large,” said Brenneman. “I am thrilled to be part of the TASH Conference to learn even more about blazing the trails for inclusion.”

The TASH Conference is a perennial draw for advocates, families, people with disabilities and related professionals and academics who converge to share ideas and discuss priorities that create positive changes in the lives of people with disabilities throughout the lifespan. For nearly four decades, the TASH Conference has been the launching pad for ideas and advocacy that have shaped supports and opportunities throughout the U.S. and abroad, and demonstrated the importance of all stakeholders working together.

“A commitment to including people regardless of disability label has the power to transform lives and communities, and exponentially benefit everyone involved,” said Barb Trader, TASH Executive Director. “That’s a philosophy we promote as an organization and through the TASH Conference, and something Ms. Brenneman espouses in her life and the lives of her children. We couldn’t be more thrilled to have her involvement in this year’s conference.”

The TASH Conference will emphasize the rethinking of long-held presumptions about people with disabilities, reflected in the conference theme, So Many Answers Left Unquestioned. This year in Long Beach, attendees, presenters and speakers will be challenged to take an intentional look at the systems and thinking that have shaped the support network for people with disabilities, including the American education system.

The TASH Conference will feature more than 150 sessions, workshops, films and training opportunities on inclusive education, employment, community living, diversity and cultural competency, human rights and other topics. Learn more about the 2012 TASH Conference at www.tash.org/2012TASH.

About TASH

A 501(c)(3) non-profit organization, TASH is an international grassroots leader in advancing inclusive communities through research, education and advocacy. Founded in 1975, we are a volunteer-driven organization that advocates for human rights and inclusion for people with the most significant disabilities and support needs – those most vulnerable to segregation, abuse, neglect and institutionalization. The inclusive practices we validate through research have been shown to improve outcomes for all people. More information about TASH can be found at www.tash.org.

2012 TASH Conference

The TASH Conference is the advocacy, networking and educational event of the year and brings together stakeholders from all aspects of the community. For 37 years, this conference has attracted leading experts and advocates on issues impacting the disability community. The 2012 conference theme draws its inspiration from a poem by Megan Jones, a self-advocate, poet and board member from North Carolina TASH. Read the full poem and learn more about the 2012 TASH Conference at www.tash.org/2012TASH.

Amy Brenneman

In addition to her current role at Violet on ABC’s Private Practice, Brenneman’s past performances include roles on NYPD Blue and Judging Amy, which Brenneman created, executive produced and starred in for six years. Her roles have garnered critical acclaim and earned multiple Emmy, Golden Globe and Screen Actors Guild award nominations, as well as three TV Guide awards for Best Actress. Find more at http://theamybrenneman.com.

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Every Monday and Wednesday night, I walk into the Fitness Center feeling a sense of anticipation.   I try to “gear up” and mentally prepare for the upcoming session.  I sometimes wonder if I experience the same feelings as a runner in training.  I have felt a sense of anticipation, nerves, and adrenaline.  I have felt a sense of readiness but may not have the skills yet to advance toward the next step of walking device-free.   I had to learn how my upper body connected to my lower body.  I had to learn to stand tall.  Like the runner in training, I learned to climb hills, learned various maneuvers and drills.  Like the runner in training, I navigated through more than one injury, and have also had false starts, falls, and many occasions where the “run” needed to be done again.

I had to learn three core principles which became a mantra: “First, posture, then stability, leads to improved mobility.”  Posture defined in the broadest terms means standing tall.

In my case, stability means literally learning to stand on both of my feet without walking aids.  Improved mobility means that I am gaining skills that I need to walk without devices, but in a larger sense it means expanding my opportunities, expectations, and reaching a little farther and a little higher.

Most people regardless of having a disability want to reach their “highest level”.  They do not want to have fewer opportunities.  They do not want to settle for average or less.   A runner in training is not going to settle for “middle- of- the road” running skills or an average time. They train to improve their skills or running time.

There are points when running is harder compared to others; but the runner will eventually find their rhythm and cadence.   There have been a number of times when I have fallen and have not reached a goal.  Yet, like the runner in training, I have had to revisit the principles of standing tall, finding my stride, and setting the pace.   If I fall, I get up.  There are times when getting up is harder.  There are times when I need help to get up again, but I get up and try again and again until I achieve the goal or improve the skill.   Settling for average is not a part of the equation.

My gains have come from the willingness to try and fall.  My gains have also come from the willingness of other people (my trainers, physicians, etc.) to work with me to explore, try, and adapt strategies.  They willingly engage with me in non-traditional methods; even though the initial outcome might be that I fall.  The key is they respect my choice to try and fall.

I am learning to stand tall through this process.  I have sought to challenge people to look at the notion of disability through a different lens.  Now, I have a new call—refuse to settle for middle- of- the- road or average.  When you fall, get up, and try again and again.  Like the runner in training, reach for the highest level, the fastest time –whatever the goal, reach higher!

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Motivation is defined as [i] the forces acting on or within a person to initiate a behavior.  The literature defines clear concepts which contribute to motivation. The first focuses on goal setting. My goal when I go to the fitness center is to improve my walking.

The second focuses on the ideas of preparation and follow through.   When I consider the concept of follow through for my own workout routine and walking program, it includes eating well, avoiding chocolate cake and other sweets which I enjoy, drinking enough water, and performing the established home exercise routines.

The final concepts outlined in literature include the idea of discipline and commitment.  To me, discipline means walking into the fitness center, fulfilling the expectations of the professional or professionals I work with, and completing the routines and assigned tasks.

Most of the time, I am motivated.  There are also occasions where I have no interest and feel apathetic about exercise and my defined goal.  There are days when I just hate walking in the door of the fitness center.  My body aches, my legs are stiff, or I just hurt and don’t want to be there.

Yet when I walk through that door; I have a self-expectation that I should set the apathy and lack of motivation aside and move ahead.   I also have an unwritten contract with the professional who works with me.  They have committed their time and energy toward supporting my goal, so I have to follow through on my end of the deal.

I have this idea that when I walk in the door of the fitness center; my mood, demeanor, and approach should be all business no matter what I may be feeling.  There is a script.  If I follow the script, I give a self-report talking about the impact of the last session.  I identify what specific muscle groups are fatigued.   I report how tired I am, and how long it took to recover from the impact of the last session or if I am still feeling the effect.

The fitness professionals have a script of their own.  Some type of acknowledgment will happen such as a verbal okay or nod that will affirm my report and then the work will begin.  Instructions will be delivered about what I’m expected to do.  Through the first one or two sets of exercises, the physical and/or physiological response might be the expected one.  Then, usually there will be the unexpected reaction like muscle tremor or a loss of balance.  Activity may have to halt because of pain.

The well-intentioned fitness professional will say “I know this is frustrating.”   In one of my more feisty moments, I will answer and raise the question, “Have you ever lost control of your body?”  The professional is a witness to the reaction.  They do not feel it.

For me, this loss of control is frequent and common.  There are many sessions where I watch my legs go from a fully bent position, where my feet are flat on the floor, to spastic where my legs go into involuntary muscular contractions.  I watch as one or both of my legs will uncontrollably rise into a state of rigidity.  It does not matter if I am seated or lying down. I am not able to bring my legs back to the floor.  This phenomenon can last for several minutes.

I will confirm it is frustrating when a person does not have control their body.  I get angry.  There is no script or prewritten instructions about how to manage or react when your legs uncontrollably rise.   So, where does the concept of apathy and overcoming it fit in?  Literature identifies characteristics like a fear failure, procrastination or laziness as some of the explanations for apathy.

My reply is there is a natural fear of failure for any person who chooses an unconventional approach to address a challenge regardless of whether they have a disability.  People with or without disabilities can procrastinate or at times be lazy.  There are days when I just do not want to do my exercises.  For a person with a disability, apathy may be created from factors like: a lack of control, frustration about a lack of control particularly around an inability to control their own body.  Feelings of apathy may come from experiencing pain and just being physically and emotionally drained from it.  Apathy may result from simply not having a clear idea about what to do next or how to advance a desired goal.

Research confirms that each client has “motivational limits” that a fitness professional needs to take into account in their work with a client.  Some themes and guidelines to increase client motivation to participate in exercise and fitness from prevailing research include:

1. People are more likely to engage in active exercise if they have someone else to be active with.
2. An exercise program should include gradual activity progression that is, a gradual increase in exercise with increases in frequency, intensity, and time, with achievable short-term goals.
3. Fitness professionals need to educate their clients about the health benefits of both short- and long-term goals.  Knowledge and information may empower the person and improve their “mental outlook” and self-efficacy toward exercise and fitness. :[ii]

Additional strategies to overcome characteristics of apathy include: reevaluating the developed plan, setting new goals, and getting rid of bad habits.  I have applied these principles in my own walking program.  In terms of reevaluating the  developed plan for the walking program, I have learned that the more direct I am with the professional working with me, and the quicker unnecessary “scripts” are eliminated, the more time and attention can be directed toward plan modification.

When I say, “I’m questioning everything we are doing.”  The professional can counter and say “I’m seeing changes.” and report what the changes they are observing are.  They can also give me an idea of what their vision is to move the program ahead.

When my limbs go spastic, I have developed a strategy of communicating with the professional to say that we need to go to “Plan B”.  If the initial focus on upper body work produces an unexpected result, emphasis can switch to lower body work.    There are also instances where I just need to sit, have the professional observe, and have quiet to collect myself.  I will not engage in a discussion until after the unexpected reaction such as tremor or phenomena of pain passes.

Part of the reevaluation, is also trying to discover cause-and-effect. That is, why did I experience tremor or pain?  There is not always an answer for cause-and-effect.  The process of trying to figure it out hones my communication with the professional.  One recent strategy that we have explored is using an anatomy chart so that I can just point to where I feel reaction versus trying to verbalize it.

When a workout plan does not go as intended or expected, new goals always emerge.  New exercises may be assigned or I am instructed to implement new strategies to eliminate a bad habit such as staying away from chocolate or reducing caffeine intake.

In my attempt to walk without devices, the truth is that I do not want to fail.  The goal I am trying to master is continual improvement.  Apathy and frustration are a part of this process of improvement.  The emergence of apathy and frustration need to be better understood by both the client and the professionals working with them.  Scripted responses like “I know it’s frustrating,” do not necessarily placate circumstances or foster progression.

True progression happens when questions are raised by both the client and professional.  Recognition that there is no rule book and offering a “Plan B”, quiet, and space for the client to deal with the unexpected reactions is also important to move ahead.  The fitness professionals who work with me support achievement of my goals by recognizing when I have fit my “motivational limit”.  They provide the information, flexibility, and space I need to regroup.

Finally, evaluation of cause-and-effect may not lead to an answer, but instead may foster new ways of thinking and create new tools (e.g.  Using an anatomy chart to show origins of pain or physiological reaction) to advance goal achievement or define new goals.

Understanding motivation, motivational limits, and apathy for a client has a critical place in fitness program development.  Fitness professionals can support clients in the achievement of their goals by offering a range of motivational tools to overcome apathy (e.g. a written fitness plan, written benchmarks for short and long term goals, etc.).   Motivating clients to engage in fitness is a complex process.  Supporting clients to recognize and combat motivational limits through information-sharing, communication, and other strategies is critical to improving a client’s overall health.

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Adults over the age of 85 are becoming the fastest growing population sector.[i]  According to the U.S. Census Bureau projections, the aging population will more than double by the year 2050, to 80 million.   At that time approximately 1 in 5 Americans will be “elderly”. The majority of this growth will occur between 2010 and 2030.  Literature has shown that Aging and disability are linked.   Current estimates indicate that 52.6% of people over age 75 have disabilities. [ii] 

We know that supporting people with disabilities and people who are aging in their home costs less than other long-term care options such as providing care within nursing home settings.  Providing community-based supports and using innovative models is one strategy which can support people with disabilities and people who are aging to maintain their independence.

An Innovative Home Maintenance Model

The Capital District of New York State is the home of a unique nonprofit program that helps people who are aging and people with disabilities to keep the two things they cherish: Their homes and their independence.

The program, called “Umbrella of the Capital District” (Umbrella), provides a wide range of personal, professional and home maintenance assistance.   Services include house cleaning, grocery shopping, painting, plumbing, and home repairs.  What’s unusual about Umbrella is that 70 percent of the agency’s workers are retirees!

Ron Byrne and Elaine Santore, Co-directors of Umbrella, founded the organization 15 years ago when they realized that many people with disabilities and people who are aging (ages 70 and above) needed a little ongoing support in order to live safely and independently in their homes.

Umbrella is unique because it matches homeowners with semi-retired people who support home maintenance, lawn maintenance, masonry, painting, electrical work, plumbing and a variety of other services.

To be eligible for Umbrella of the Capital District services:

a)      A candidate must own and live in the home to be maintained, and

b)      At least one of the owners or residents must 55 years of age and/or have a disability that precludes their ability to maintain their home independently.  Eligibility for Umbrella services is not based on income.

Since the inception of Umbrella of the Capital District, Ron Byrne and Elaine Santore have drawn upon personal experiences which led to the discovery of the tremendous potential

of semi-retired people or retirees to help others to live independently.

Both Byrne and Santore had close family members that sustained major injuries in later life.   In both cases, local retirees provided support that made it possible for their relatives to return home to  live independently.

According to Byrne, “In many ways Umbrella is the direct result of the experience we had as caregivers.”

Umbrella of the Capital District serves three counties within the Capital Region of New York Albany, Schenectady, and Troy. Over 500 paying members depend on Umbrella for help with everything from routine housecleaning and yard work to dealing with plumbing or heating emergencies.

Retirees have various skill and experience, and most are looking for ways to share what they know with others.  Umbrella uses this often untapped resource by uniting homeowners in need of assistance with retirees who want to help people.  This arrangement has been a win-win situation earning Umbrella a prestigious Met Life/Civic Ventures Encore Award in 2009.

The award recognizes Umbrella as exemplary and as one of the best programs in the country for linking service with retirement and valuing the expertise of people who want to do something meaningful after retirement.  For many people with disabilities and people who are aging, the difference between choosing to remain at home and being forced to move to another long-term care option, is having access to low-cost, trustworthy, and reliable home maintenance.

Based on the income of each household and the size of the house involved, Umbrella members directly pay between $145 and $315 per year for membership or are funded in part or entirely through third parties including local government, private donations, or through grant funding.

Umbrella provides all members with a safety inspection and the ability to schedule routine maintenance and home repairs.  Members also have access to a round-the-clock emergency help line.

“I [Kerry Wiley] have been a member of Umbrella since 2005.  Support from Umbrella has afforded me more self-reliance and independence.  Umbrella has supported me in various ways including those unexpected home emergencies.  There was one instance, where I had a glass window shatter.  I needed help to clean up the broken glass, and who would you call for that type of support?”
“People we serve place their trust in our organization and we take their welfare very seriously, says Byrne. We know each member personally, and conduct business and provide attention that we would give members of our own families.   Personal attention is the hallmark of Umbrella.”

Growing A Community Based Model

According to Elaine Santore, “The past 15 years, have taught us a great deal about supporting independent living. We have captured these lessons in the form of an operations manual that we use to both operate Umbrella of the Capital District and to create new branches of Umbrella.”

According to Santore, “Ron and I act as paid consultants to work with groups to start new branches of Umbrella.    Umbrella of the Capital District serves as the sponsoring organization for a period of one year.  We guide groups through the process of getting new Umbrella branches up and running.  We provide consultation on topics including setting up the program infrastructure, retiree recruitment, and general to day to day operations.”    

Santore notes “Umbrella is growing with chapters located in Colonie New York and Syracuse New York.”

In addition to work performed by Umbrella recruited retirees directly, several businesses have teamed with Umbrella to provide volunteers for larger projects including roof repairs and replacements, replacement of doors and windows, and major electrical, plumbing, and  lawn and garden projects.

Umbrella also refers homeowners to vetted contractors for major repairs at reduced prices, and works with local government by providing weatherization services and emergency repairs for low-income seniors at no cost.  Umbrella of the Capital District has also partnered with numerous volunteer groups and local businesses to carry a variety of minor to moderate maintenance and lawn and garden work at no cost.

Umbrella embodies community- based support in its truest sense.  Umbrella affords its members, independence and self-sufficiency.    Comments from an Umbrella member put it best, “I know that help is just a phone call away–24 hours a day– Umbrella is helping me stay at home and in my community.”

For more information about Umbrella of the Capital District, see: http://theumbrella.org/

If you have specific questions about Umbrella of the Capital District, inquiries may be sent to: (ron@theumbrealla.org) or (elaine@theumbrella.org).

Acknowledgements: Special Thanks to Ron Byrne and Elaine Santore for their contributions to this article.

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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.

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1. “Beyond The Box” Part I
2. Detours-Part 2
3. Detours-Part 3

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: – The Explorer/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: The Maverick… 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.

Read Part II of Beyond the Box Tuesday March 20,2012.

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The hormone, PYY, is part of chemical system that regulates appetite and energy. In fact, PYY is an appetite-suppressing hormone. When people eat or exercise the hormone is released into the bloodstream. The amount of PYY released is based upon the number of calories consumed. But the system naturally has some glitches that keep people from losing weight by eating less. For example, overweight people may have lower concentrations of PYY in their bloodstreams when they are fasting AND just after they eat. This may mean that their serum levels of PYY are low. It has been shown that if the levels of PYY are increased the calories consumed by the person are reduced because they feel full.

When the gum is sold commercially sometime in the near future, people will have a natural way to lose weight. We will be able to eat a balanced and nutritious meal, and then chew a stick of the PYY gum. The PYY carried by the gum will kick in slowly, about 3-4 hours later. Then we will feel less hungry when meal time comes around- and lose weight as we eat less naturally.

To learn more: check out the publication: Science Daily Nov. 21, 2011

Or see the website of Dr. Robert Doyle, Assoc. Professor in Dept of Chemistry at Syracuse University. www.syr.edu/faculty/doyle.html

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The Exeter group studied 78 people who reported that they often ate chocolate. They divided these folks into two groups, and gave both groups work to do at office desks.  One group was given a 15 minute walk on a treadmill as exercise to do before beginning the work and the other half just sat down and started working. Everyone in the study was given a full bowl of chocolate candy right on their desks the whole day, from which they were told they were welcome to eat.

The work assigned to each group was either “hard” or “easy” at the start of the study, and then switched. That way all people had both easy and hard tasks to do over the course of the day, so that any snacking they did could be related to the stress of getting work done, if stress had anything to do with snacking.

Both groups ate from the bowl of chocolate on their desks. It was found that people consumed much less chocolate if they took a brisk 15 minute walk before being assigned their work. No matter whether the work was easy or difficult, the workers ate only half as much chocolate (one fun size bar compared to two fun size bars) if they had taken exercise. Due to this finding, it was determined that stress did not increase the amount of snacking done by either of the groups- since both groups had both easy and hard work to do but only one group had exercise.

The Exeter group found that since exercise – which was already known to have significant side benefits for mood and energy levels and has been helpful in managing addictions- can also reduce cravings for chocolate. It was found that 15 minutes of exercise reduces the craving for chocolate snacks, even when chocolate is right on the desk within an arm’s reach.

For more information check out Science Daily (Dec 7, 2011) at http://www.sciencedaily.com/releases/2011/12/111207105313.htm

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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.

Kerry expresses thanks to her trainer, James R. House, III

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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”.

Related posts:

1. Microsoft Accessibility – software and accommodations for computer users with disabilities