Relationship Lays Foundation for Meeting New Challenges
Kerry Wiley was born with spastic diplegia, a form of cerebral palsy that makes her muscles very stiff. Kerry first walked at the age of 4 years and has had three corrective surgeries (in the adductors, heel cords, and hamstrings) to reduce spasticity. Despite this, Kerry has never been excluded from participation in academic- or employment-related activities, physical activity, leisure activity, etc., though this has not been without fighting or adversity. Disability covers every sphere of existence – social, economic, physical, spiritual, etc. Her participation has required a great deal of advocacy, both on her part and her family's, in order to educate herself and others on what she COULD do.
This concept of inclusion – adapting, modifying, and finding the right people and supports that would allow for her maximum participation in activities – was ingrained in Kerry from her earliest memories. She never felt her family coddled her, but instead trained her for problem-solving. She was just expected to "do".
In Kerry's middle and high school years, she took part in "regular" physical education with peers. She learned to throw a football, shot baskets while sitting in a chair, played volleyball with one-handed serves, played field hockey with the stick duct-taped to her cane, and ran the track and field modules (which meant running beside the hurdles while her peers were jumping over them). However, Kerry had her own hurdles. How could she make others see her capabilities over perceived deficits? From her early youth, she had to be a teacher of others and find a common vocabulary to explain physical anomalies.
From adolescence into adulthood, Kerry had to deal with invasive tests in an effort to diagnose causes of pain (in hands, arms, and back) that were not typical for someone of that age. There were consequences from having relied so heavily on her upper body for ambulation for the past 20+ years. Between the ages of 18 and 30, Kerry experienced a backlash from the excessive upper-extremity usage in her current activity, ambulation, and training. Hands are not meant to carry one's full body weight, and not meant to be used for walking (her current walking pattern was like that of a penguin – a shuffle and a foot-drag). These issues came to a head in October 2005 at the age of 30, when Kerry was no longer happy with the conventional treatment options presented to her. She wanted to maintain her mobility, and the development of chronic pain was not acceptable in her opinion. In an attempt to reduce this pain, different walking devices were tried. The most recent set of walking devices suggested by Kerry's physicians and therapist were crutches that had an arm band that restricted her movement and freedom even more, and only seemed to increase the number of falls she took. The sparks of advocacy that had been taught over the course of so many years rose in her again. She was not going to accept the limits of her situation.
Kerry started to seek out partners outside the medical profession. While physicians provided guidance, she sought community expertise and support and explored a repertoire of interventions. Kerry, upon the referral of her physical therapist, started to work with personal trainers from Plaza Fitness in Albany, New York in May 2006. Prior to this, Kerry had often experienced attitudinal barriers and fear from a variety of professionals (having worked with over 100 in her lifetime!), but Plaza was very "open door" and readily customized a program based on fitness tests and assessments, and lifestyle elements, that looked at ALL of her muscles, not just the ones of the upper extremity, as many other professionals had always suggested.
Kerry's regular trainer was (and remains) Jason Berner, a professional with knowledge of physical education, sports management, and fitness. Jason immediately presented the philosophy of "no limits". Despite having had little experience in training clients with disabilities and with disability in general, Jason was willing, along with the management of Plaza Fitness, to take on a trail-blazing role in a unique experiment with Kerry and her fitness program. One of the first questions Jason asked (which was largely due to his inexperience with working with people with disabilities, and ultimately was an advantage in this situation) was, "Why didn't someone teach you to use your legs?" Kerry didn't have a good answer for him. So his next statement was, "OK, Let's see what you can do," not even alluding to the "cannot".
From there, Jason and Kerry created a program. It initially included resistive and passive stretching and upper-body strength training, eventually adding the leg muscles as well as Botox injections every 4 months (often used in treatment of muscle spasms). Jason set goals that Kerry liked, which included increasing functional ability as opposed to merely saving what is already working. Kerry's goals included walking device-free in public (Kerry walks device-free in home and work settings and is now walking up to 50 to 100 feet device-free in public and her "penguin-gait" is fading), and her future goals include completing a marathon. Maybe some of these goals won't happen, but to get someone in the industry to set these types of goals without preconceptions is refreshing and groundbreaking.
Working with Jason and his colleagues at Plaza Fitness brought Kerry to new thresholds. Her body was responding, and she was developing function in her legs and doing things she could not have dreamed of before. She even began to walk on a treadmill without devices at 0.5-1.0 mph. However, even with the improvements experienced from her workouts, Kerry was still encountering some challenges, specifically with her balance. Together, using a sometimes feared approach of trial and error, she and Jason found that aquatic therapy supported the core work she was doing on the stability ball and through this, she slowly began to increase her balance.
Currently Kerry works 1.5 hours with Jason over 2 days per week in which he supports non-independent tasks that are incorporated into her program. This program is currently focusing on increasing strength in her agonists and antagonists (specifically in her thighs – quadriceps and hamstrings) as well as increasing body awareness and development techniques for patterns. She goes to the pool 3 days per week for a full-body workout and continually adds elements based on her gains.
Prior to working with Kerry, Jason had no disability experience and little disability knowledge, but his focus on the client as a person, as well as his willingness to learn, combined with an innate ability to teach and motivate, were what turned out to be the most important aspects of this successful relationship. To keep his learning process on a steady incline, Jason currently uses Plaza's resources and monthly seminars to increase and maintain his general physical activity knowledge, but he considers himself self-trained in disability, seeking the necessary education through experiences and conversations with Kerry and other clients and often using the Internet for applicable resources (including those at www.ncpad.org).
The relationship-building that Jason was so willing to do and the personal rapport that developed as a result were crucial. Yes, there were times that they disagreed, but according to Kerry, this served to build their relationship and only made their progress stronger. Kerry has also worked with other trainers at Plaza and has found the general attitude and facility policy to be "customer first, disability second." This is rare, especially in fitness and exercise fields. Plaza's approach is also more holistic than she had found in other fitness arenas, involving discussions and counseling on nutrition, stress, and making healthy lifestyle changes. Given that disability covers every sphere of life, Kerry felt this approach was well suited to what she needed and wanted.
What makes the relationship between Kerry and Jason work is the "trial and error element" and the willingness of both Kerry and Jason to take on challenges and problem-solving. It has been a 50/50 partnership between the client and professional – information sharing, trying new modalities, and not letting obstacles hide or influence progress.
Kerry has what is surely a rare amount of drive and initiative and an action-oriented, assertive attitude. In truth, a lot of responsibility fell on Kerry, the client, to lay the groundwork for their relationship. She discussed working with Jason and her program with her physicians and therapists and gained their involvement and support; if any issues arise, Jason appropriately calls Kerry's physical therapist and/or physician, or seeks a useful off-site resource. This is above and beyond what many fitness professionals may consider to be in their own scope of practice, but it is not difficult or all that more time-consuming, and can expand trainer-client relationships and clientele dramatically, regardless of whether or not a client has a disability. According to both Kerry and Jason, the trainer must be willing to think outside the box and adapt to situations, and an individualized approach is a must, as much for personality as for physical concerns. Kerry is still the one responsible for knowing her disability and current condition and for providing information based on Jason's comments, questions, and expertise on fitness and physical activity. Bringing in appropriate healthcare and other supports from the client's life are indeed valuable, but it is important to be selective and allow the client to lay the initial groundwork for successful relationships between physicians, therapists, and personal trainers. According to Jason, the client is the number-one resource.
The technical expertise and direct support provided to Kerry through Jason and the other trainers at Plaza helped her to develop body function over previous dysfunction. Jason helped her unscramble a barrier – learning that she could gain functional control of her limbs - but equally, if not more importantly, he allowed her to experience a gift. This gift was the release of attitudinal barriers to which Kerry, and many people with disabilities, are so accustomed. You can do over what you can not do. Through training, instruction, and altering lifestyle choices, Kerry feels her locus of control, freedom, and participation has dramatically increased.
Similar to the days of her adolescence, she has new worlds to conquer; only this time she is jumping over the hurdles rather than running beside them. Limitations in Kerry's life have mostly been attitudinal, not physical. Jason and his manager were willing to take on the challenges of inclusion and worked with her to develop routines adapted to her presenting needs and challenges, helping Kerry forge ahead on this unknown and exciting road. Inclusion in the truest sense of the word was afforded to Kerry by these professionals. Even if the outcome of walking device-free is not reached, success has been achieved.
Kerry and Jason co-authored an article titled "Taking Control of Your Health and Wellness: Taking Strides Toward a More Fulfilling Life," published in the May 2007 New York State Developmental Disabilities Planning Council e-bulletin. To access it, please go to http://www.ebulletin.us/archive/2007/may/05_07_bridge/05_07_take_cont_your_ealth_well.php.
About Jason Berner: Jason earned a Bachelor of Science degree in physical education from the State University of New York College at Cortland in 1999 and holds nationally recognized fitness certifications from the APEX Fitness Group and Aerobics and Fitness Association of America. Jason started with Plaza Fitness in March 2006, but trained clients prior to that at the YMCA as well as the Department of Physical Education at the United States Military Academy at West Point. For more information about Plaza Fitness, go to www.plazafitness.net/index.htm.